【英語】お知らせ

2024-09-22 Supported a patient group initiative.

2024-09-20 Accepted our paper by The Lancet Global Health.

2024-09-17 Supported a World Patient Safety Day Event Hosted by a Company

2024-09-15 Supported the Public Lecture at the 24th Conference on CRC and Clinical Trials.

2024-09-15 A digital poster was presented at the 24th Conference on CRC and Clinical Trials.

2024-08-31 Patients with rare diseases and their families from Saga Prefecture were invited to a Sagan Tosu home game.

2024-08-26 Participated in a dialogue session hosted by a company.

2024-08-20 The Ethics Review Committee has revised the Regulations for Accepting Ethics Review Requests.

2024-08-19 Organized Study tour for RDD high school students (Osaka Meisei High School)

2024-08-19 The joint meeting of the Ethics Committee and the Conflict of Interest Management Committee was held.

2024-08-01 ASrid Celebrates Its 10th Anniversary.

2024-07-31 Published the RDD 2024 event report.

2024-07-31 Released the official RDD Japan 2024 movie.

2024-07-30 Released STEP Dialogue Vol.3 on the STEP Learning website.

2024-07-27 Supported an Event Hosted by RDD-Participating High School

2024-07-24 Participated in a dialogue session organized by the company.

2024-07-21 Participated as a support staff at the booth of a patient association at the 6th Annual Meeting of the Japanese Association for Home Care Medicine.

2024-07-20 The Ethics Review Committee Regulations have been revised.

2024-07-20 The Ethics Review Committee has revised the Regulations for Accepting Ethics Review Requests.

2024-07-18 Lectured at an internal seminar of the company.

2024-07-11 Participated in the AMED Advisory Board Meeting.

2024-07-09 Held a Conflict of Interest Management Committee meeting.

2024-07-07 Supported a patient group initiative.

2024-06-30 Supported a patient group initiative.

2024-06-28 RDD Satellite Event: An Exchange Meeting with RDD Ambassador and the Saga NANBYO Consultation and Support Center.

2024-06-28 The common template for the Informed Consent Form (ICF), created by JPMA, has been published.

2024-06-20 The archive of the HGPI lecture has been released.

2024-06-19 Lecture at Sophia University.

2024-06-18 JRARE regular meeting was held.

2024-06-18 Lecture at Osaka Meisei High School.

2024-06-16 Lecture at k-mic.

2024-06-12 Lecture on Research-Based Learning at High School.

2024-06-10 Japanese version of statement released by Rare Disease International.

2024-05-30 Lectured at the 66th Annual Meeting of the Japanese Society of Child Neurology, Seminar organized by the Joint Research Promotion Committee.

2024-05-28 Gave a Lecture at the Japan Pharmaceutical Manufacturers Association.

2024-05-23 Spoke at HGPI's "NANBYO Day" Symposium.

2024-05-23 The video of the commemorative lecture, "May 23 is NANBYO Day," hosted by Hokkaido Medical Center has been released.

2024-05-21 Participated in IRDiRC meeting.

2024-05-19 Participated in the JPA Annual General Meeting as a cooperating organization.

2024-05-16 Lectured at an internal seminar of the company.

2024-05-16 We held a dialogue session between high school and university students and corporate MR professionals.

2024-05-16 Presentation at ECRD 2024 conference.

2024-05-12 "Let's Learn About Rare and Intractable Diseases: A Gathering of Pediatricians and High School Students" Held.

2024-05-07 ASrid released the final survey report on the employment of individuals with rare and chronic diseases.

2024-05-01 【Supported event】HGPI Intractable Disease Day Symposium

2024-05-01 【Supported Event】Day for Understanding IBD Osaka.

2024-05-01 【Supported Event】Rare Cancer Community Day.

2024-04-30 The survey report on patient participation in clinical trials, in which ASrid collaborated, has been published.

2024-04-27 Published STEP Dialog Vol.2 on the STEP Learning site.

2024-04-26 Appointed as Outreach Partner of ECRD 2024.

2024-04-22 Lectured at an internal seminar of the company.

2024-04-22 Gave a lecture at an internal seminar of the company.

2024-04-20 The Ethics Review Committee has revised the Ethics Review Entrustment Regulations.

2024-04-14 Attended the JPA Executive Committee meeting and reported on international collaboration and RDD.

2024-03-26 Held a Conflict of Interest Management Committee meeting.

2024-03-24 Lectured at RDD Ishigakijima.

2024-03-18 Participated in the JPA Support Project Evaluation Committee.

2024-03-13 Participated in the Sanofi Global Patient Council.

2024-03-10 JRARE regular meeting was held.

2024-03-09 Held a Kids Doodle Party at RDD Aozora Republic.

2024-03-09 Presentation at the 15th Annual Meeting of the Japan Clinical Trials Association.

2024-03-08 Exhibited and gave a lecture at the company's internal RDD awareness event.

2024-03-04 Exhibited and lectured at the company's internal RDD awareness event.

2024-03-03 Lectured at RDD Familia Yamaguchi.

2024-03-01 Visited the House of Councillors Members' Office Building during the RDD JPA event.

2024-02-29 A paper has been published in the Rare Disease and Orphan Drugs Journal.

2024-02-29 As part of the RDD Japan event, we illuminated the Tokyo Tower.

2024-02-29 Hosted the RDD Japan event.

2024-02-29 An RDD advertisement was published in the Asahi Shimbun

2024-02-29 A full-page advertisement was published in the NIKKEI Shimbun

2024-02-25 Lectured at the Citizen Gathering x RDD Osaka Symposium.

2024-02-20 Lectured at the company's internal awareness event for Rare Disease Day.

2024-02-20 Exhibited at the internal awareness event for Rare Disease Day (RDD) .

2024-02-17 The RDD exhibition at Tokyo Tower has begun.

2024-02-15 Exhibited and gave a lecture at the company's internal RDD awareness event.

2024-02-14 An interview article was published in IBD Plus

2024-02-08 Co-hosted the RDD Symposium with Takeda Pharmaceutical Company.

2024-02-04 Co-hosted the PMDA RDD2024 Symposium with the Japan Pharmaceutical Manufacturers Association.

2024-02-03 Presentation at the 8th Mitochondrial Disease Research Open Forum.

2024-02-01 Held the RDD2024 Kickoff Live event.

2024-01-21 Presentation our research findings at the Type II collagenopathies Patient and Family Association.

2024-01-17 Lectured at an internal seminar of a company.

2023-12-27 Held an RDD internship for junior and senior high school students.

2023-12-26 The third RDD High School Summit was held.

2023-12-20 Held the RDD2024 Sponsor Day.

2023-12-19 Conducted the RDD High School Study Tour (National Institute of Technology, Tsuruoka College).

2023-12-18 JRARE regular meeting was held.

2023-12-18 Conducted the RDD High School Study Tour (Sakata Nishi High School).

2023-12-15 Participated in the Advisory Board Meeting of the Japan Pharmaceutical Manufacturers Association's Committee for Promoting Collaboration with Patient Groups.

2023-12-15 GIST Advisors Meeting Report is Now Available.

2023-12-14 Organized a webinar for high school students held on RDD2024.

2023-12-14 Conducted a webinar targeted at high schools and high school students for RDD2024.

2023-12-13 Lectured at Pharma Delegates.

2023-12-12 Lectured at an elementary school.

2023-12-11 Lectured and participated in a workshop at a corporate internal seminar.

2023-12-10 Set up an RDD booth at a children's Christmas event.

2023-12-08 Presentation at the 46th Annual Meeting of the Japanese Society of Pediatric Genetics.

2023-12-07 Presentation at the 39th National NANBYO Center Research Meeting.

2023-12-03 Participated as a research collaborator in the Congenital Cerebral White Matter Disorders Research Group meeting and gave a presentation.

2023-12-03 Presentation our projects at the JPA Executive Committee meeting.

2023-11-26 Conducted the 4th Kids Doodle Party at Aozora Republic.

2023-11-25 Supported patient group annual meeting.

2023-11-24 Presentation at the 11th conference for Japan NANBO Medical Network.

2023-11-22 Organized Study tour for RDD high school students (Sakata Nishi High School).

2023-11-18 Presentation at the National Forum on Rare and Chronic Diseases 2023 (NANBYO Forum 2023).

2023-11-15 The RDD lecture was conducted for corporation.

2023-11-12 RDD lecture was held.

2023-11-10 The PhaRMA chair had a dialogue with patient groups.

2023-11-10 Organized a webinar for high school students held on RDD2024.

2023-11-07 Presentation at the 20th DIA Japan annual meeting.

2023-11-03 Presentation at the 41st Annual Meeting of the Japanese Society for Neurological Therapeutics.

2023-10-29 Participated in RDD event at National Institute of Technology, Tsuruoka College.

2023-10-28 Organized Study tour for RDD high school students (Osaka Meisei High School).

2023-10-22 Organized the XLH Cafe. as part of the STEP Project.

2023-10-22 Lectured at Sakata Nishi High School.

2023-10-22 Participated in the Campus Fest and visited the RDD booth.

2023-10-10 Lectured at National Institute of Technology, Tsuruoka College.

2023-10-07 Lectured in a symposium at the 64th Annual Meeting of the Japanese Society for Inherited Metabolism Diseases.

2023-10-05 Participated in IRDiRC meeting.

2023-10-04 Organized a webinar for high school students held on RDD2024.

2023-10-02 Discussion with NORD.

2023-09-29 Lecture at Tottori Seikyo Hospital.

2023-09-28 Discussion with students at Osaka Jogakuin Junior and Senior High School School.

2023-09-24 ASrid held the 9th general assembly.

2023-09-16 Discussion with students at Kobe Kaisei Girl's Junior and Senior High School.

2023-09-13 Organized a webinar for high school students held on RDD2024.

2023-09-12 Lecture at Sakata Nishi High School

2023-09-03 Supported the Ultra-Universal Baseball Tournament.

2023-09-02 RDD2024 website is now available.

2023-09-02 We held the JRARE 10th-anniversary event.

2023-08-29 lecture at the Japanese Association of Children's Hospital and Related Institutions, Nursing Division Directors' Liaison Meeting.

2023-08-25 Introduced high school students to the history of RDDs.

2023-08-20 Presentation at the Cancer Patients Conference.

2023-08-19 Lecture at an event hosted by high school students.

2023-08-08 The article appeared in HuffPost Japan.

2023-08-01 Survey on Trends in Promoting Public and Patient Understanding and Participation in Clinical Research, etc." has been released.

2023-08-01 Attended the press conference held by the Patients' Association at the MHLW.

2023-07-31 New content, "STEP Dialogue," is now available on the STEP Learning website.

2023-07-31 The report of RDD Japan2023 is now available.

2023-07-29 Participated in a health literacy event organized by a patient support organization

2023-07-29 RDD Japan 2023 Official Movie is now available.

2023-07-20 Lecture at Kobe Kaisei junior and high school.

2023-07-16 Introduced RDD activity in MISS GRAND Japan & MR GAY JAPAN

2023-07-08 Introduced examples of collaboration with academic societies at the board meeting of the Japanese Society of Neurological Therapeutics.

2023-07-07 Presentation at a corporate in-house seminar.

2023-07-05 Discussion with students at Osaka Meisei High School.

2023-06-27 Participated in the kick-off meeting of "Society for Making Clinical Trials More Accessible to All".

2023-06-25 Participated as a support staff at the booth of a patient association at the 5th Annual Meeting of the Japanese Association for Home Care Medicine.

2023-06-20 Presided over the Webinar as APARDO.

2023-06-18 Supported patient group annual meeting.

2023-06-17 Participated in IRDiRC meeting.

2023-06-16 Participated in the general meeting of PPI JAPAN.

2023-06-12 Lecture at Osaka Meisei High School

2023-06-11 Organized GIST Advisors Meeting.

2023-06-08 Participated in the press conference of the "Society for Making Clinical Trials More Accessible to All".

2023-06-06 J-RARE regular meeting was held.

2023-06-02 Presentation at a corporate in-house seminar.

2023-05-28 Supported patient group events.

2023-05-27 The RDD Japan 2023 season has finally ended.

2023-05-18 An article was published in MIRAI PORT.

2023-05-14 Participated in the JPA Annual General Meeting as a cooperating organization.

2023-05-10 Presentation at the RESTA seminar.

2023-05-06 Participated in the NORD for the Living Rare, Living Stronger Patient and Family Forum.

2023-05-04 Participated in RDD Global Steering Committee

2023-04-16 Participated as a panelist at RDD familia Yamaguchi.

2023-04-16 Presented our projects at the JPA Executive Committee meeting.

2023-04-11 Participated as a facilitator in the corporate internal dialogue program.

2023-04-05 Presentation at an in-house event of a marketing company.

2023-03-21 The 2nd RDD High School Summit was held.

2023-03-18 Presentation at RDD medUnet.

2023-03-18 Conducted the RDD Tokyo satellite event.

2023-03-16 Participated in an in-house event organized by a pharmaceutical company.

2023-03-15 Participated in the evaluation committee on JPA support program.

2023-03-13 Served as a facilitator at the RDD Hamamatsucho building.

2023-03-12 Held the 3rd Kids Doodle Party at RDD Aozora Republic.

2023-03-06 Participated in RDD Tottori Opinion Exchange.

2023-03-06 J-RARE regular meeting was held.

2023-03-01 We challenged a crowdfunding project and succeeded.

2023-02-28 Held the RDD Tokyo event.

2023-02-28 Tokyo Tower was lit up as part of RDD Japan event.

2023-02-28 Participated in the RDD campaign video created by RDI.

2023-02-26 Appeared as a guest on a radio show.

2023-02-26 Released the special program "Children's Feelings, Family's Feelings" for RDD 2023.

2023-02-25 Held the RDD×WheeLog! collaboration project.

2023-02-23 Presentation at RDD Hokkaido.

2023-02-22 Exhibited at RDD internal awareness event for a pharmaceutical company.

2023-02-21 Exhibited at RDD internal awareness event for a pharmaceutical company.

2023-02-20 RDD exhibition has started at Osaka Umeda Station.

2023-02-20 Released the special program "RDD and Healthcare Professionals".

2023-02-18 Presentation at RDD Mie.

2023-02-18 The RDD exhibition at Tokyo Tower has begun.

2023-02-16 RDD Press Seminar was co-hosted with Pfizer.

2023-02-15 Exhibited at RDD internal awareness event for a pharmaceutical company.

2023-02-12 RDD Symposium was co-hosted with Takeda Pharmaceutical Co.,Ltd.

2023-02-07 Presentation at the 15th ICORD conference

2023-02-05 Presentation at RDD Tohoku University.

2023-02-04 Lecture at the Mitochondrial Disease Research Open Forum.

2023-02-01 RDD Japan kickoff YouTube broadcast was held

2023-01-30 Served as a facilitator at the RDD PPI.

2023-01-24 Presentation at a corporate in-house seminar.

2023-01-20 Served as a facilitator at the 7th PPI Workshop "Minna no Radio PPI".

2023-01-16 The Conflict of Interest Management Committee was held.

2023-01-12 Presentation at the town hall hosted by pharmaceutical company.

2022-12-25 set up an RDD booth at "Hello! Henteko Town 2022".

2022-12-24 Held an RDD exhibition session at the Pharmaceutical company's event

2022-12-23 Organized a webinar for high school students held on RDD2023.

2022-12-22 Organized a webinar for high school students held on RDD2023.

2022-12-21 Organized a webinar for high school students held on RDD2023.

2022-12-21 Contributed a comment to an introduction article about corporate patient advocacy activities.

2022-12-20 Organized a webinar for high school students held on RDD2023.

2022-12-16 Lecture at Sakatanishi high school.

2022-12-15 Organized Study tour for RDD high school students (National Institute of Technology, Tsuruoka College).

2022-12-12 Presentation at the Pharmaceutical company's Patient Day event.

2022-12-12 RDD Japan 2022 Official Movie is now available.

2022-12-11 Participated in Annual meeting of Pelizaeus-Merzbacher disease and related disorders research group as a research collaborator

2022-12-07 GIST Advisors Meeting Report is Now Available

2022-12-06 J-RARE regular meeting was held.

2022-12-06 ASrid Cooperated in a dialogue project hosted by a company.

2022-12-02 Held a RDD 2023 Sponsor Day.

2022-11-30 Participated in IRDiRC meeting

2022-11-30 Served as a facilitator at the 40th Pharmaceutical Industry Patient Group Seminar.

2022-11-26 Presented several domestic cases at the APARDO Conference 2022

2022-11-26 Presentation at the 33th conference for the Japanese Association for Human Auxology

2022-11-22 Organized Study tour for RDD high school students (Kobe Kaisei high school)

2022-11-18 Presentation at the 10th conference for Japan NANBO Medical Network (educational session)

2022-11-18 Presentation at the 10th conference for Japan NANBO Medical Network

2022-11-12 Published the materials at the exhibition session of the NANBYO Forum 2022.

2022-11-12 Organized as an executive committee organization at the National Forum on Intractable and Chronic Diseases 2022 (NANBYO Forum 2022),

2022-11-07 Participated in Annual meeting of Pelizaeus-Merzbacher disease and related disorders research group as a research collaborator

2022-11-04 Participated in the patient advisory meeting

2022-10-29 Organized Study tour for RDD high school students (Kobe Kaisei high school)

2022-10-26 Participated in an exchange of opinions meeting between PhRMA and patient groups.

2022-10-23 Organized the XLH Cafe. as part of the STEP Project.

2022-10-19 Participated in the press conference for the NANBYO Forum 2022.

2022-10-11 Participated in the 19th DIA Japan annual meeting 2022 as a session panelist

2022-10-09 Organized Kids Doodle Party at the Aozora Republic.

2022-10-04 Lecture at National Institute of Technology, Tsuruoka College.

2022-09-30 Lecture at the 3rd Academia Clinical Development Seminar.

2022-09-25 ASrid held the 8th general assembly.

2022-09-13 Lecture at the 3rd Biobank Forum

2022-09-11 GIST Advisors Meeting Held.

2022-09-06 J-RARE steering committee was held.

2022-09-06 J-RARE regular meeting was held

2022-09-03 Lecture at Kobe Kaisei junior and high school

2022-08-31 The Conflict of Interest Management Committee was held.

2022-08-20 RDD High School Initiatives Presented with High School Students at the Hyper Interdisciplinary Conference.

2022-08-20 RDD Osaka Meisei Gakuen held a study tour.

2022-07-31 The RDD Japan 2022 season has finally ended.

2022-07-31 The First RDD Japan High School Summit was held.

2022-07-19 Advisor, Mr. Nobuaki Kobayashi, Passed Away on July 10, 2022.

2022-07-07 Discussion with students at Osaka Meisei High School

2022-07-01 Presentation at ECRD 2020 conference (2 posters)

2022-06-30 [Press Release] STEP LEARNING Website, an Information Portal Site Responding to the "Want to Know" of People with Rare and Intractable Diseases, is Now Open.

2022-06-25 Lecture at the 69th Annual Meeting of the Japanese Society of Child Health

2022-06-25 [Press Release] "T-Style Read Aloud Instructional App for web" for teaching and supporting dyslexia is now available.

2022-06-15 Participated in the RDI membership meeting

2022-06-14 J-RARE regular meeting was held

2022-06-13 Lecture at Osaka Meisei High School

2022-06-04 Organized the joint art exhibition and interactive art appreciation workshop with the 64th Annual Meeting of the Japanese Society for Child Neurology.

2022-05-26 【Press Release】MOU Signed with PPeCC

2022-05-25 Lectured at the Japan Pharmaceutical Manufacturers Association, Committee for Promotion of Patient Group Collaboration.

2022-05-11 【Press Release】"Ne, Asobo," an Information Portal Site for Play for Severely Mentally and Physically Handicapped Children and Children in Medical Care, is Released

2022-04-22 Article published in Rare Disease and Orphan Drugs Journal.

2022-03-30 Participated as a panelist at the PhRMA PAC Roundtable.

2022-03-29 RDD Tokyo extravaganza: Dialogue planned and conducted.

2022-03-28 Participated on Webinar "Radio PPI" at the 6th Patient and Public Involvement Study Group

2022-03-24 The Japanese text of the resolution adopted by the UN General Assembly on December 16, 2021 is now available.

2022-03-23 Participated in the evaluation committee on JPA support program.

2022-03-22 Article in AMED Public Relations Magazine.

2022-03-20 APEC ACTION PLAN ON RARE DISEASES is now available in Japanese

2022-03-15 J-RARE regular meeting was held

2022-03-14 Lectured at a corporate-sponsored seminar.

2022-03-12 Lectured at the RDD Aozora Republic

2022-03-09 Participated in IRDiRC meeting

2022-03-09 Lectured at RDD Hamamatsucho Building

2022-03-07 Lecture at RDD Tottori

2022-02-28 Participated in RDD Global Event

2022-02-28 Tokyo Tower was lit up as part of RDD Japan event

2022-02-28 RDD Tokyo was organized.

2022-02-28 RDD Japan/Tokyo Hall Exhibition was held

2022-02-28 Supported Illumina Corporation's RDD Global Campaign.

2022-02-27 RDD Japan concert program to be released

2022-02-26 RDD Special Program is now available

2022-02-18 RDD Japan exhibition has started!

2022-02-17 Introduced Japan's initiatives in a webinar hosted by the RDD Global/EURORDIS】

2022-02-14 RDD Press Seminar was co-hosted with Pfizer

2022-02-06 RDD Symposium was co-hosted with Takeda Pharmaceutical Co.,Ltd.

2022-02-06 Oral presentation at the 36th Society of NANBYO Centers

2022-02-01 RDD Japan kickoff YouTube broadcast was held

2022-02-01 RDD Month has started

2021-12-26 J-RARE steering committee was held.

2021-12-24 Organized a webinar for high school students held on RDD2022

2021-12-24 ASrid Cooperated in a dialogue project hosted by a company.

2021-12-24 【Press Release】Announcement of STEP (Strategic Translational Action for Empowering Patients) Establishment, Information Community for Rare Disease Stakeholders

2021-12-21 Organized a webinar for high school students held on RDD2022

2021-12-21 Presentation at the 80th Annual Meeting of the Japanese Society of Public Health.

2021-12-20 Organized a webinar for high school students held on RDD2022

2021-12-16 Organized Study tour for RDD high school students (Sakata-Nishi high school)

2021-12-15 Organized a webinar for high school students held on RDD

2021-12-07 J-RARE regular meeting was held

2021-11-19 Presentation at the 9th conference for Japan NANBO Medical Network

2021-11-13 Organized Study tour for RDD high school students (Kakogawa Minami high school)

2021-11-07 Report on the Results of the Questionnaire Survey on Employment of People with Intractable and Chronic Diseases (First Report)" has been released

2021-11-06 Organized as an executive committee organization at the National Forum on Intractable and Chronic Diseases 2021 (NANBYO Forum 2021),

2021-11-05 An article was published in the "Community Care"

2021-11-04 Organized Study tour for RDD high school students (Kobe Kaisei high school)

2021-11-01 Presentation at PPI JAPAN Dialogue Meeting

2021-10-29 Presentation at the 39th Annual Meeting of the Japanese Society of Neurological Therapeutics

2021-10-25 Session Chair/Moderator for the 18th DIA Japan annual meeting 2021

2021-10-24 Presentation and attended the panel discussion at the Global Patient Advocacy Leadership Summit: Asia Pacific Regional Session

2021-10-22 Lecture at Sakatanishi high school

2021-10-06 Facilitator for a company-sponsored dialogue project

2021-10-02 Online poster presentarion at the 13th conference for Japanese Association of Health Communication

2021-09-26 ASrid held the 7th general assembly

2021-09-21 Lecture at Kakogawa-Minami High School

2021-09-15 RDD High School Study tour was held, cohosted with Kobe Kaisei high school

2021-09-11 RDD High School Study tour was held, cohosted with Osaka Meisei high school

2021-09-07 J-RARE regular meeting was held

2021-09-01 Published the RDD2022 JAPAN website.

2021-08-19 Have Organized a Workshop on Play and Care for Children with Severe Physical and Mental Disabilities and Children in Medical Care for 3 months

2021-08-19 RDD Japan 2021 Official Movie is now available.

2021-08-13 Organized a Webinar on Play and Care for Children with Severe Physical and Mental Disabilities and Children in Medical Care

2021-08-07 Discussion with students at Kobe Kaisei junior and high school

2021-08-05 Organized Study tour for RDD high school students (Osaka Meisei Gakuen)

2021-07-28 ASrid's activities were introduced in "Genetic Disorders Plus".

2021-07-27 Discussion with students at Osaka Meisei High School

2021-07-26 The Conflict of Interest Management Committee was held.

2021-07-25 The RDD Japan 2021 season has finally ended

2021-07-22 Participated in Annual meeting of Pelizaeus-Merzbacher disease and related disorders research group as a research collaborator

2021-07-17 Lecture at Kobe Kaisei junior and high school

2021-07-16 Presentation at the 3rd DIA Japan Patient Engagement Webinar

2021-07-08 Lecture at Osaka Meisei High School

2021-07-07 Mr. Kazuhiko Mori has been appointed to the ASrid Advisory Board.

2021-07-01 The final version of the "Survey on the Impact of Novel Coronavirus Infection (COVID-19) on Patient groups/associations with Rare and Intractable Diseases" conducted by ASrid is now available.

2021-07-01 APARDO directors (2021-) are listed on the website.

2021-06-30 Online Roundtable Discussion on "Research on the Impact of COVID-19 on Patients and Families with Rare and Incurable Diseases" is now available.

2021-06-24 The final version of the "Survey on the Impact of Novel Coronavirus Infection (COVID-19) on Patients and Families with Rare and Intractable Diseases" conducted by ASrid is now available.

2021-06-08 J-RARE regular meeting was held

2021-06-08 A comprehensive patient exploratory survey on Glycogenic Disease Type 1a has been conducted and a list of national medical institutions has been compiled.

2021-06-02 Presentation at the Pfizer in-department seminar

2021-05-26 Participated in the RDI membership meeting

2021-05-07 The preliminary version of the "Survey on the Impact of Novel Coronavirus Infection (COVID-19) on Patients and Families with Rare and Intractable Diseases" conducted by ASrid is now available.

2021-04-30 Participated in RDD Global Steering Committee

2021-04-23 Presentation at the 2nd DIA Japan Patient Engagement Webinar

2021-04-20 The Conflict of Interest Management Committee was held.

2021-04-04 Part of the COVID19 survey conducted by ASrid was published in a weekly magazine.

2021-03-29 Participate in the working group of the Inclusive Academic Project (Inclusive Design in Science Education Environment).

2021-03-28 Presentation at the 5th Annual Meeting of HAE Forum

2021-03-26 Publish a report; "The contributions of the intermediate organization -MHLW’s "daytime activity support” to revise the fees for welfare service for persons with disabilities"

2021-03-21 Review meeting with high school students who held RDD2021

2021-03-10 Lecture at RDD Hamamatsucho-Building.

2021-03-09 J-RARE regular meeting was held

2021-03-07 Lecture at RDD Telemedicine.

2021-02-28 RDD Tokyo was organized.

2021-02-28 Lecture at RDD Tottori.

2021-02-16 RDD Press Seminar was co-hosted with Pfizer

2021-02-14 RDD Symposium was co-hosted with Takeda Pharmaceutical Co.,Ltd.

2021-02-11 Presentation at the 24th JTTA Annual Academic Conference

2021-02-09 Participated the APARDO AGM

2021-02-01 RDD Japan kickoff YouTube broadcast was held

2021-02-01 RDD Month has started,

2021-01-24 Participated in the patient advisory meeting

2021-01-23 Presentation at the Mitochondrial Disease Research Open Forum

2021-01-15 Conducted a study tour for high school students, for the purpose of holding RDD at the high school

2020-12-29 The Conflict of Interest Management Committee was held.

2020-12-22 Conducted a study tour for high school students, for the purpose of holding RDD at the high school

2020-12-20 Participated in Pelizaeus-Merzbacher disease and related disorders research seminar as a research collaborator

2020-12-15 Webinar was held with high school students hosting RDD.

2020-12-13 Conducted a study tour for high school students, for the purpose of holding RDD at the high school

2020-12-09 Presentation at the APARDO Conference 2020

2020-12-08 J-RARE regular meeting was held

2020-12-06 Participated in the patient advisory meeting

2020-12-04 Presentation at the 2nd Asia Pacific Patients Congress

2020-11-29 An article was published in the "Jikkenigaku" (Journal of Experimental Medicine).

2020-11-23 Invited to join the Duke-NUS Patient Engagement Roundtable 2020

2020-11-21 Presentation at the 8th conference for Japan NANBO Medical Network

2020-11-18 Organized a webinar for high school students held on RDD

2020-11-17 Organized a webinar for high school students held on RDD

2020-11-11 Organized a webinar for high school students held on RDD

2020-11-10 Organized a webinar for high school students held on RDD

2020-11-09 Participated as a panelist at the 17th DIA Japan annual meeting 2020

2020-11-09 Presentation at the 17th DIA Japan annual meeting 2020

2020-11-09 Our poster presented at ECRD 2020 was selected for the Selected Presentation Award and published in the Orphanet Journal.

2020-11-07 The report about COVID-19 prepared by ASrid was featured on NHK News

2020-11-07 Organized as an executive committee organization at the Japan NANBYO Patient and Family Conference 2020

2020-11-07 Survey of Patients and Families with COVID-19 Infections : Preliminary Report is now available

2020-11-01 Presentation at the 35th the Japan Society for Research Policy and Innovation Management.

2020-10-30 Appointed to the board of directors of PPI.

2020-10-28 Invited lecture at Kakogawa−Minami High School

2020-10-19 ASrid was offered a subsidy from the Kobayashi Aoitori Foundation grant

2020-10-13 A Commentary was published in the Japan Society of Clinical Trials and Research

2020-10-08 Presentation at the Sanofi JPAC Townhall meeting

2020-10-07 Awarded the sixth "Lights upon the Mountain" Award

2020-10-06 Presentation at the Health Policy Academy, organized by HGPI

2020-10-02 Participated in IRDiRC annual meeting

2020-09-28 Presentation and attended the panel discussion at the PPI Japan Study group

2020-09-27 ASrid held the 6th general assembly

2020-09-15 "RDD Japan with High School students" the kickoff webmeeting was held

2020-09-11 The ASrid logo has been registered as a trademark

2020-09-10 Presentation and attended the panel discussion at the HMIC 2020 Conference

2020-09-10 Invited to join the ISPOR Patient Representatives Roundtable– Asia-Pacific

2020-09-01 J-RARE regular meeting was held

2020-08-28 Presentation at the 1st DIA Japan Patient Engagement Webinar

2020-08-28 Presentation at World Orphan Drug Congress USA 2020

2020-08-21 An introductory article on ASrid has been published.

2020-08-19 Recommendations from overseas organizations (RDI and EURORDIS) related to COVID-19 have been updated.

2020-08-07 The research paper was published in the Journal of Health Sciences

2020-08-04 An introductory article on ASrid has been published.

2020-07-20 Invited lecture at Osaka Meisei High School

2020-07-09 Invited lecture at Study Group Meeting

2020-07-03 ASrid cancels ODOD2020 workshop

2020-07-01 Invited lecture at Annual Meeting of the Japanese Society of Toxicology

2020-06-30 Survey of "A study on the QOL of children under medical care and their families in a medical short-term care facility” is now available

2020-06-29 Participated the WHO Focus Group Discussion

2020-06-26 J-RARE regular meeting was held

2020-06-17 The interview article was posted on the NCD Alliance Japan website

2020-06-01 The World Index of Patient Groups for Rare Diseases (WINPR), a website that allows you to cross-search Japanese and foreign patient organizations by disease name in each country's language, is now available.

2020-05-30 ASrid/RDD Japan secretariat office organized RDD Tokyo

2020-05-29 Preliminary results of the survey of "A study on the QOL of children under medical care and their families in a medical short-term care facility” are now available

2020-05-15 Presentation at ECRD 2020 conference (3 posters)

2020-05-11 Recommendations from overseas organizations (NORD and EURORDIS) related to COVID-19 are summarized.

2020-05-10 The manuscript was published in the Gene Medicine MOOK No. 35

2020-05-04 The Economist re has been added to "International Reports on NANBYO (Rare and Intractable Diseases)" page

2020-04-25 RDD Tokyo online event will be held on May 30

2020-04-10 J-RARE steering committee was held

2020-03-26 J-RARE regular meeting was held

2020-03-14 Participated in IRDiRC Web meeing

2020-03-09 Participated in the evaluation committee on JPA support program

2020-02-29 Released the statement about the deferment of RDD2020 Tokyo event

2020-02-29 Collaboration with NPO PADM to Create and Disseminate Care Instructions.

2020-02-28 Presentation at Takeda Pharmaceutical Company Limited

2020-02-20 Presentation at RDD Mie

2020-02-18 Presentation at RDD Hamamatsucho-Building

2020-02-14 Participated in panel session on the press seminar hosted by Kyowa Kirin Co., Ltd.

2020-02-13 Lecture at Sagami Women's University Junior High School

2020-02-13 Presentation at MICIN,Inc

2020-02-04 Presentation at RDD2020 press seminar hosted by Pfizer

2020-02-01 Moderating RDD seminar at Takeda Pharmaceutical Company Limited

2020-01-30 Presentation at Amicus Therapeutics, Inc.

2020-01-15 Conducted a study tour for high school students, for the purpose of holding RDD at the high school

2019-12-22 Participated in pre-campaign of RDD Osaka Meisei Gakuen

2019-12-21 Corporated with a RDD charity golf competition

2019-12-14 Displayed drawings which made at Kids Doodle Party in 5 Octorber 2019

2019-12-12 Held a RDD 2020 Sponsor Day

2019-12-08 Participated in the pre-campaign of RDD Kochi

2019-12-05 Participated in the pre-campaign of RDD Hamamatsucho building

2019-12-02 J-RARE regular meeting was held

2019-12-01 Presentation at JPA secretary meeting

2019-11-21 Participated in IRDiRC Consortium Assembly Meeting

2019-11-16 Presentation at the general assembly of IBD network

2019-11-16 Presentation at The Japanese Society of Medical Networking for Intractable Diseases.

2019-11-16 Invited to a dinner at the Embassy of the United States

2019-11-13 Presentation at IAPO Asia-Pacific Patients Congress in Taiwan

2019-11-12 Booth exhibition at 16th DIA Japan annual meeting 2019

2019-11-09 Organized an exhibition session at the Japan NANBYO Patient and Family Conference 2019

2019-11-01 Presentation at Nobelpharma Co., Ltd.

2019-10-19 Presentation at APARDO Summit 2019 in Taiwan

2019-10-09 Presentation at CSL Behring Inc.

2019-10-05 Held "Doodle Kids Party" at Aozora Republic

2019-09-29 ASrid held the 5th general assembly

2019-09-24 Conducted a study tour for high school students, for the purpose of holding RDD at the high school

2019-09-21 Presentation at 8th China Rare Disease Summit in China

2019-09-20 Held a kikk-off meeting about WINPR

2019-09-15 Planed and acted as the chairperson of an extension lectureon 19th Conference on CRC and Clinical Trials

2019-09-14 Participated in the NCD Alliance Japan workshop

2019-09-14 Moderating a symposium at 19th Conference on CRC and Clinical Trials

2019-09-04 J-RARE regular meeting was held

2019-09-01 Opened RDD 2020 JAPAN Website

2019-08-22 Participated in the first woking group about inclusive design constructing in science education environment

2019-08-01 Lectured on NANBYO for elementary school students and parents at Peptide Dream Co.

2019-07-28 Participated in the NCD Alliance Japan workshop

2019-07-27 Organized ODOD2019 workshop

2019-07-24 Participated PPI Consortium in Japan launch meeting, as an initial member

2019-07-20 Participated in study meeting, "Let's learn for patients", as one of organizers

2019-07-19 Lecture at Kobe Kaisei junior and high school

2019-07-13 Participated in Pelizaeus-Merzbacher disease and related disorders research seminar as a research collaborator

2019-07-01 Patient and Public Involvement Consortium in Japan was established

2019-06-17 Lecture at Osaka Meisei High School

2019-06-07 Released the implementation report about Surprise project

2019-06-07 Implemented Surprise project for rare disease patient

2019-05-11 Presentation at Rare Diseases International meeting

2019-05-02 Facilitated the group discussion at the ICOSEP Annual Membership Meeting 2019

2019-04-12 Presentation at World Orphan Drug Congress USA 2019

2019-04-11 Patient and family talk session at RDD Tokyo was featured at Medical Note

2019-04-01 Shun EMOTO was assigned to ASrid full-time researcher

2019-03-23 Participated in study meeting as one of organizers

2019-03-16 Presentation at RDD University of Tokyo , Graduate School of Pharmaceutical Sciences

2019-03-02 Presentation at RDD Aozora-Republic

2019-02-28 Organized introduced Oral History Project at RDD Tokyo

2019-02-28 ASrid/RDD Japan secretariat office organized RDD Tokyo

2019-02-28 Rare and intractable diseases-related materials have been released

2019-02-27 RDD2019 Press Seminar was held

2019-02-21 Participated in RDD United Nation

2019-02-20 Participated in the roadmap launch event organized by the Global Commission

2019-02-20 ASrid became a regular member of RDI (Rare Disease International)

2019-02-19 RDD Japan was introduced at The Chunichi Shimbun

2019-02-17 Presentation at RDD University of Tokyo , Graduate School of Pharmaceutical Sciences

2019-02-17 Presentation at Rare Disease Informatics 2019 meeting

2019-02-16 Participated in RDD Meisei High School

2019-02-16 Lecture at Mitochondrial Disease Research Open Forum.

2019-02-08 Presentation at RDD Hamamatsucho-Building

2019-02-01 "Rare diseases feature" was released on CareNet.com

2019-01-26 J-RARE steering committee was held

2019-01-19 Presentation at RDD JCR Pharma Ashiya Public Lecture

2019-01-04 An article on RDD Japan was published in Mainichi Newspaper

2018-12-15 Oral presentation at the Smips (Society for management of intellectual properties)

2018-12-11 RDD2018 Sponsor Day was held

2018-12-06 Participated in the 13th IRDiRC Consortium Assembly Meeting

2018-11-17 Exhibition session was held at NANBYO Forum 2018

2018-11-11 Booth exhibition was held at 15th DIA Japan annual meeting

2018-11-07 Oral presentation at the Pharma Delegates Special Seminar

2018-11-04 Oral presentations at the 30th Society of NANBYO Centers

2018-11-02 Conducted a study tour for high school students, for the purpose of holding RDD at the high school

2018-10-28 Oral Presentation at the Open Lecture for Citizen, 12th International BMP Conference

2018-10-26 Report on the situation of Japan's efforts at APARDO Policy Forum & Workshop

2018-10-15 Poster presentation on Rare Disease Day JAPAN at NORD breakthrough Summit

2018-10-03 Contributed a report on Japan's efforts to the UDNI Newsletter

2018-09-30 ASrid held the 4th general assembly

2018-09-20 Yukiko Nishimura had a presentation at the ICORD 2018

2018-09-18 Lecture at Norwegian National Advisory Unit on Rare Disorders

2018-09-02 J-RARE steering committee was held

2018-08-11 Yukiko Nishimura and Shun Emoto had a poster presentations at the 4th Japan Muscle Society

2018-08-01 A Research Paper was published in the Japan Society of Clinical Trials and Research

2018-07-28 ASrid organized ODOD2018 workshop

2018-07-26 An article on J-RARE was published in a newsletter published by the Japan Marfan Association

2018-07-12 Yukiko Nishimura gave a lecture at the Patient Forum organized by Eli Lilly Japan K.K.

2018-07-09 ASrid gave a lecture at Osaka Meisei High School

2018-06-15 Yukiko Nishimura participated in panel session on the summit organized by MetLife

2018-06-01 ASrid launched the Oral History project for leaders in the NANBYO patient associations

2018-05-14 Yukiko Nishimura participated in the 9th IRDiRC Consortium Assembly meeting

2018-05-12 Yukiko Nishimura and Shun Emoto had a poster presentation at the ECRD 2018, respectively

2018-04-26 Yukiko Nishimura gave a presentation at World Orphan Drug Congress USA 2018

2018-04-20 ASrid was offered a subsidy from the KIRIN Foundation grant

2018-04-19 Shun Emoto facilitated the group discussion at the ICOSEP Annual Membership Meeting 2018

2018-04-15 ASrid's activity was posted on the Journal of Industry-Academia-Government collaboration (published by Japan Science and Technology Agency)

2018-03-31 RDD Japan official team/ASrid have finished the RDD 2018 events in Japan

2018-03-14 Yukiko Nishimura elected as Vice Chair of the Patient Advocacy Constituent Committee, IRDiRC

2018-02-28 ASrid organized RDD Tokyo

2018-02-25 Yukiko Nishimura had a presentation at RDD Saitama

2018-02-25 RDD Japan was introduced at Medical Tribune

2018-02-24 Kunihiro Nishimura had a presentation at RDD AOZORA KYOWAKOKU, Yamanashi

2018-02-24 Shun Emoto had a presentation at RDD Mie

2018-02-24 Yukiko Nishimura had a presentation at RDD Hokkaido

2018-02-20 RDD Japan was introduced at Heart Net Website

2018-02-20 RDD Japan was introduced at Heart Net TV, NHK E-tele

2018-02-18 Yukiko Nishimura had a presentation at RDD AOMORI

2018-02-10 Shun Emote and Yukiko Nishimura had a poster presentation at the Society of NANBYO Centers, respectively

2018-02-07 Shun Emoto had a presentation at an event organized by NPO Citizen's Science Initiative Japan

2018-02-05 Yukiko Nishimura had a presentation at RDD CMIC Holdings, Co., Ltd.

2018-02-01 RDD2018 Press Seminar was held

2018-02-01 RDD Secretariat office (inside ASrid) issue a press release about RDD 2018 in Japan

2018-01-31 Yukiko Nishimura gave presentation at the 3rd committee for "Survey on Patient and Public Involvement in Clinical Research etc.”, organized by AMED

2018-01-27 Shun Emoto had a presentation at the 20th annual conference for Japanese Society for Adult Congenital Heart Disease

2018-01-21 ASrid’s Activity was introduced to the Mainichi Newspaper

2017-12-12 RDD Sponsor Day, the first attempt at RDD Japan, was held.

2017-12-09 ASrid organized ELSI Workshop Vol.4

2017-11-26 Shun Emoto gave presentation at Silver-Russel Syndrome patient group event

2017-11-25 ASrid organized the exhibition session at Japan Patient and Family Conference 2017

2017-11-18 ASrid organized ELSI Workshop Vol.3

2017-11-14 ASrid put up the exhibition booth at 14th DIA Japan annual meeting

2017-11-10 ASrid members participated in IRDiRC General Assembly

2017-11-09 Yukiko Nishimura had a presentation at JCR Pharmaceutical Co., Ltd.

2017-11-05 Shun Emoto had a presentation at 28th Conference of Society of NANBYO Centers

2017-10-29 Shun Emoto had a presentation at the 32nd Japan Society for Research Policy and Innovation Management.

2017-10-25 J-RARE was featured at Nikkei Medical Journal

2017-10-14 ASrid organized ELSI Workshop Vol.2

2017-09-30 ASrid hold the 3rd general assembly

2017-09-23 Yukiko Nishimura had a presentation at medical seminar held by SRS Network

2017-09-20 Shun Emoto had a presentation at Novo Nordisk, Inc.

2017-09-16 ASrid organized ELSI Workshop Vol.1

2017-09-14 An article of Rare Disease Day was published in the Nihon Keizai Shimbun.

2017-09-09 Yukiko Nishimura had a presentation at the ICORD 2017

2017-09-09 Shun Emote and Yukiko Nishimura had a poster presentation at the ICORD 2017, respectively.

2017-09-02 Yukiko Nishimura had a presentation at the 17th Conference on CRC and Clinical Trials 2017 in Nagoya

2017-08-28 Lecture at Shire Japan K.K.

2017-08-06 ASrid organized J-RARE steering committee

2017-07-22 ASrid organized ODOD2017 workshop

2017-07-17 ASrid organized ELSI Workshop as a kickoff meeting

2017-07-02 RDD Secretariat office (inside ASrid) released the RDD2017 official movie on the web

2017-06-25 Yukiko Nishimura had a presentation at Nimokaka Club (Pediatric patients’ family group in Hanno, Saitama)

2017-06-05 Yukiko Nishimura had a presentation as a lecturer of the employee workshop at Nagahama Zeroji Club.

2017-04-29 Yukiko Nishimura had a presentation at a board meeting of NPO PADM (Patient Association for Distal Myopathies)

2017-04-21 Yukiko Nishimura gave a presentation at World Orphan Drug Congress 2017

2017-04-15 An article of ASrid was published in the information magazine "Manekineko" organized by VHO-net

2017-04-11 Yukiko Nishimura gave a presentation at GLOBIS MBA School

2017-03-20 RDD Japan official team/ASrid have finished the RDD 2017 events in Japan

2017-03-19 ASrid hold a debrief meeting (FY15-16) about J-RARE project (funded by MHLW), Yaesu, Tokyo

2017-03-11 Shun Emoto had a presentation at the 5th ICOSEP Annual Meeting

2017-02-25 Yukiko Nishimura had a presentation about J-RARE at Mitochondrial diseases patients forum organized by AMED MITO research group.

2017-02-09 Yukiko Nishimura had a presentation at the 3rd IRDiRC conference

2017-02-06 RDD Secretariat office (inside ASrid) issue a press release about RDD 2017 in Japan

2017-02-04 Kunihiro Nishimura had a presentation about the introduction of ASrid, Rare Disease Day, and J-RARE at the training workshop organized by Tokyo Rare and Intractable Diseases Support Center.

2016-12-20 ASrid was offered a subsidy from AMED reserach grant

2016-11-20 Shun Emoto conducted a presentation at a board meeting of Achondroplasia patient and family group

2016-11-19 Yukiko Nishimura facilitated the workgroup discussion at RD Asia Conference 2016

2016-11-15 Rare Disease Day Japan Secretariat office (inside NPO ASrid) put up the exhibition booth, and also moderated the chat session at 13th DIA Japan annual meeting.

2016-11-11 Yukiko Nishimura gave a presentation at the inaugural meeting, NGO Committee for Rare Diseases

2016-11-05 Go Yoshizawa and Yukiko Nishimura gave a presentation at Japan Society for Research Policy and Innovation Management

2016-10-10 Yukiko Nishimura and Shun Emoto gave presentations at Silver-Russel Syndrome patient group event

2016-10-08 Yukiko Nishimura gave a presentation at the REASE woking group, University of Tokyo

2016-09-09 Guideline for the Cooperation and Collaboration of Research (for Patient Group) is now available.

2016-08-28 ASrid organized the J-RARE research meeting

2016-08-26 Yukiko Nishimura gave a presentation at the Department of Research and Development of Next Generation Medicine, Kyushu University

2016-08-20 Masatoshi Iwasaki gave a presentation at JAMAA (Japan Marfan Association) event

2016-07-01 ASrid was offered a subsidy from MHLW reserach grant

2016-05-30 Yukiko Nishimura participated in the panel discussion, ECRD 2016

2016-05-30 Masatoshi Iwasaki had a poster presentation at ECRD 2016

2016-04-24 Yukiko Nishimura participated in the panel discussion, World OD Congress 2016

2016-04-01 Guideline for the Cooperation and Collaboration of Research (3rd version) is now available.

2016-03-15 RDD Japan official team/ASrid have finished the RDD 2016 events in Japan

2016-02-01 RDD Japan official team/ASrid will organize RDD2016 in Japan

2016-01-20 Advisor, Dr. Ichiro Kanazawa, Passed Away on January 20, 2016