Collaborative Research with Patient-Related Organizations
This section introduces case studies of collaborative research with patient/patient advocacy organizations in the field of rare and intractable diseases (NANBYO) that can be made public. Also, projects and studies for which confidentiality agreements have been signed are not listed. (Last update date: September 25, 2024)
Year 2024
2024-09-22 Supported a patient group initiative. 【swallowing and feeding disorders】【support】
2024-09-20 Accepted our paper by The Lancet Global Health. 【global community】【research paper】
2024-09-15 Supported the Public Lecture at the 24th Conference on CRC and Clinical Trials. 【domestic conference】【RDD】【Junior/senior high school student】【planning】
2024-09-15 A digital poster was presented at the 24th Conference on CRC and Clinical Trials. 【domestic conference】【poster presentation】
2024-08-31 Patients with rare diseases and their families from Saga Prefecture were invited to a Sagan Tosu home game. 【RDD】【social】
2024-07-31 Published the RDD 2024 event report. 【RDD】【report】
2024-07-31 Released the official RDD Japan 2024 movie. 【RDD】【report】
2024-07-30 Released STEP Dialogue Vol.3 on the STEP Learning website. 【STEP】【CMT】
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. 【Issacs syndrome】【support】
2024-07-07 Supported a patient group initiative. 【swallowing and feeding disorders】【support】
2024-06-30 Supported a patient group initiative. 【FAP】【support】
2024-06-28 RDD Satellite Event: An Exchange Meeting with RDD Ambassador and the Saga NANBYO Consultation and Support Center. 【RDD】【social】
2024-06-18 JRARE regular meeting was held. 【JRARE】【all NANBYO】
2024-06-10 Japanese version of statement released by Rare Disease International. 【global community】【report】
2024-05-21 Participated in IRDiRC meeting. 【global community】【invited】
2024-05-19 Participated in the JPA Annual General Meeting as a cooperating organization. 【JPA】
2024-05-16 Presentation at ECRD 2024 conference. 【ECRD】【poster presentation】
2024-05-07 ASrid released the final survey report on the employment of individuals with rare and chronic diseases. 【all NANBYO】【report】
2024-05-01 【Supported event】HGPI Intractable Disease Day Symposium 【supported】【thinktank】
2024-05-01 【Supported Event】Day for Understanding IBD Osaka. 【supported】【IBD】
2024-05-01 【Supported Event】Rare Cancer Community Day. 【supported】【rare cancer】
2024-04-26 Appointed as Outreach Partner of ECRD 2024. 【global community】【ECRD】【Steering committee】
2024-04-14 Attended the JPA Executive Committee meeting and reported on international collaboration and RDD. 【JPA】【report】
2024-03-24 Lectured at RDD Ishigakijima. 【RDD】【patient/family】
2024-03-18 Participated in the JPA Support Project Evaluation Committee. 【JPA】【report】
2024-03-13 Participated in the Sanofi Global Patient Council. 【company】【global community】【invited】
2024-03-10 JRARE regular meeting was held. 【JRARE】【all NANBYO】
2024-03-09 Held a Kids Doodle Party at RDD Aozora Republic. 【RDD】【patient/family】
2024-03-08 Exhibited and gave a lecture at the company's internal RDD awareness event. 【company】【Issacs syndrome】【RDD】
2024-03-03 Lectured at RDD Familia Yamaguchi. 【RDD】【patient/family】
2024-03-01 Visited the House of Councillors Members' Office Building during the RDD JPA event. 【diet member】【RDD】【patient/family】
2024-02-29 As part of the RDD Japan event, we illuminated the Tokyo Tower. 【RDD】【patient/family】
2024-02-29 Hosted the RDD Japan event. 【RDD】【patient/family】
2024-02-25 Lectured at the Citizen Gathering x RDD Osaka Symposium. 【RDD】【invited speaker】
2024-02-17 The RDD exhibition at Tokyo Tower has begun. 【RDD】【patient/family】
2024-02-03 Presentation at the 8th Mitochondrial Disease Research Open Forum. 【research community】【mitochondrial disease】【invited speaker】
2024-02-01 Held the RDD2024 Kickoff Live event. 【RDD】【patient/family】
Year 2023
2023-12-26 The third RDD High School Summit was held. 【Junior/senior high school student】【RDD】【summit】
2023-12-19 Conducted the RDD High School Study Tour (National Institute of Technology, Tsuruoka College). 【Junior/senior high school student】【RDD】【CMT】【Study tour】
2023-12-18 JRARE regular meeting was held. 【JRARE】【all NANBYO】
2023-12-15 GIST Advisors Meeting Report is Now Available. 【advisory board】【GIST】【report】
2023-12-11 Lectured and participated in a workshop at a corporate internal seminar. 【company】【workshop】
2023-12-10 Set up an RDD booth at a children's Christmas event. 【elementary school】【planning】
2023-12-07 Presentation at the 39th National NANBYO Center Research Meeting.【domestic conference】【RDD】【oral presentation】
2023-12-03 Presentation our projects at the JPA Executive Committee meeting. 【JPA】【RDD】
2023-11-25 Supported patient group annual meeting. 【Alagille syndrome】【support】
2023-11-18 Presentation at the National Forum on Rare and Chronic Diseases 2023 (NANBYO Forum 2023). 【all NANBYO】【planning】
2023-11-12 RDD lecture was held. 【RDD】【lecture】
2023-11-03 Presentation at the 41st Annual Meeting of the Japanese Society for Neurological Therapeutics. 【domestic conference】【FAP】【invited lecture】
2023-10-07 Lectured in a symposium at the 64th Annual Meeting of the Japanese Society for Inherited Metabolism Diseases. 【domestic conference】【invited lecture】
2023-10-05 Participated in IRDiRC meeting. 【global community】【invited participation】
2023-10-02 Discussion with NORD. 【patient association】【facilitation】
2023-09-13 Organized a webinar for high school students held on RDD2024. 【RDD】【patient/family】
2023-09-03 Supported the Ultra-Universal Baseball Tournament. 【child with medical care】
2023-09-03 Supported the Ultra-Universal Baseball Tournament. 【child with medical care】【support】
2023-09-02 We held the JRARE 10th-anniversary event. 【JRARE】【All NANBYO】
2023-08-20 Presentation at the Cancer Patients Conference. 【domestic conference】【cancer】【oral presentation】
2023-08-01 Survey on Trends in Promoting Public and Patient Understanding and Participation in Clinical Research, etc." has been released. 【AMED】【PPI】【collaborative research】
2023-08-01 Attended the press conference held by the Patients' Association at the MHLW. 【distal myopathy】【PADM】【press conference】
2023-07-31 New content, "STEP Dialogue," is now available on the STEP Learning website. 【STEP】【All NANBYO】【website】
2023-07-29 Participated in a health literacy event organized by a patient support organization 【patient and family】【infited participation】
2023-07-29 RDD Japan 2023 Official Movie is now available. 【RDD】
2023-06-27 Participated in the kick-off meeting of "Society for Making Clinical Trials More Accessible to All". 【clinical trial】【press conference】
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. 【Isaccs syndrome】【support】
2023-06-20 Presided over the Webinar as APARDO. 【global patient community】【invited participation】【facilitator】
2023-06-18 Supported patient group annual meeting. 【FAP】【support】
2023-06-17 Participated in IRDiRC meeting. 【global patient community】【invited participation】
2023-06-11 Organized GIST Advisors Meeting. 【GIST】【advisory meeting】【facilitator】
2023-05-28 Supported patient group events. 【PNH】【support】
2023-05-14 Participated in the JPA Annual General Meeting as a cooperating organization. 【patient association】【invited participation】
2023-05-06 Participated in the NORD for the Living Rare, Living Stronger Patient and Family Forum. 【global patient community】【invited participation】
2023-05-04 Participated in RDD Global Steering Committee 【global patient community】【invited participation】
2023-04-16 Participated as a panelist at RDD familia Yamaguchi. 【RDD】【invited participation】【panelist】
2023-04-16 Presented our projects at the JPA Executive Committee meeting. 【patient association】【report】
2023-03-18 Conducted the RDD Tokyo satellite event. 【RDD】【Tokyo tower】
2023-03-15 Participated in the evaluation committee on JPA support program. 【patient association】【report】
2023-03-12 Held the 3rd Kids Doodle Party at RDD Aozora Republic. 【All NANBYO】【pediatric】【workshop】【museum】
2023-03-01 We challenged a crowdfunding project and succeeded. 【RDD】【patient and family】
2023-02-28 Held the RDD Tokyo event. 【RDD】
2023-02-26 Released the special program "Children's Feelings, Family's Feelings" for RDD 2023. 【RDD】【global community】
2023-02-25 Held the RDD×WheeLog! collaboration project. 【RDD】【WheeLog】【Accessibility Map】【patient and family】
2023-02-23 Presentation at RDD Hokkaido. 【RDD】【patient and family】
2023-02-16 RDD Press Seminar was co-hosted with Pfizer. 【RDD】【patient and family】
2023-02-15 Exhibited at RDD internal awareness event for a pharmaceutical company. 【RDD】【patient and family】
2023-02-01 RDD Japan kickoff YouTube broadcast was held 【RDD】【patient and family】
2023-01-30 Served as a facilitator at the RDD PPI. 【PPI】【planning and management】【facilitator】
2023-01-20 Served as a facilitator at the 7th PPI Workshop "Minna no Radio PPI". 【PPI】【planning and management】【facilitator】
Year 2022
2022-12-07 GIST Advisors Meeting Report is Now Available 【GIST】【advisor meeting】【planning and management】【facilitator】
2022-12-06 J-RARE regular meeting was held. 【JRARE】【All NANBYO】
2022-11-26 Presented several domestic cases at the APARDO Conference 2022 【global patient community】【invited participation】【oral presentation】
2022-11-26 Presentation at the 33th conference for the Japanese Association for Human Auxology 【domestic conference】【type 2 collagen deficiency】【oral presentation】
2022-11-12 Organized as an executive committee organization at the National Forum on Intractable and Chronic Diseases 2022 (NANBYO Forum 2022), 【All NANBYO】【forum】【planning and management】
2022-10-26 Participated in an exchange of opinions meeting between PhRMA and patient groups. 【All NANBYO】【invited participation】
2022-10-23 Organized the XLH Cafe. as part of the STEP Project. 【XLH】【STEP】【Public Lecture】
2022-10-19 Participated in the press conference for the NANBYO Forum 2022. 【All NANBYO】【press conference】【planning and management】
2022-10-09 Organized Kids Doodle Party at the Aozora Republic. 【All NANBYO】【pediatric】【workshop】【museum】
2022-09-11 GIST Advisors Meeting Held. 【GIST】【advisory meeting】【facilitator】
2022-09-02 Kids Doodle Party at the Aozora Republic (October 9, Hokuto City, Yamanashi) 【All NANBYO】【pediatric】【workshop】【art museum】
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. 【STEP】【All NANBYO】【website】
2022-06-25 [Press Release] "T-Style Read Aloud Instructional App for web" for teaching and supporting dyslexia is now available. 【dyslexia】【medical institution】【website】
2022-06-15 Participated in the RDI membership meeting 【global patient community】【invited participation】
2022-05-26 【Press Release】MOU Signed with PPeCC 【patient community】【MOU】
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 【child with medical care】【website】
2022-03-29 RDD Tokyo extravaganza: Dialogue planned and conducted. 【RDD】【university】
2022-03-28 Participated in Webinar "Radio PPI" at the 6th Patient and Public Involvement Study Group 【PPI】【invited participation】
2022-03-24 The Japanese text of the resolution adopted by the UN General Assembly on December 16, 2021, is now available. 【UN】【report】
2022-03-23 Participated in the evaluation committee on the JPA support program.【patient association】【report】
2022-03-20 APEC ACTION PLAN ON RARE DISEASES is now available in Japanese 【APEC】【report】
2022-03-12 Lectured at the RDD Aozora Republic 【patient association】【RDD】【presentation】
2022-02-28 Participated in RDD Global Event 【RDD】【global patient community】
2022-02-28 Supported Illumina Corporation's RDD Global Campaign. 【RDD】【patient/family】
2022-02-16 Introduced Japan's initiatives in a webinar hosted by the RDD Global/EURORDIS】 【global patient community】【RDD】【presentation】
2022-02-06 Oral presentation at the 36th Society of NANBYO Centers 【Type 2 collagen disorders】【domestic conference】【oral presentation】
Year 2021
2021-12-24 【Press Release】Announcement of STEP (Strategic Translational Action for Empowering Patients) Establishment, Information Community for Rare Disease Stakeholders 【All NANBYO】【STEP】
2021-11-19 Presentation at the 9th conference for Japan NANBO Medical Network 【domestic conference】【child with medical care】【presentation award】
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【All NANBYO】【labor】【report】
2021-11-06 Organized as an executive committee organization at the Japan NANBYO Patient and Family Conference 2021 【All NANBYO】【planning and operation】
2021-11-05 An article was published in the "Community Care" 【industry journal】【regoinal support】【contributed article】
2021-10-24 Presentation and attended the panel discussion at the Global Patient Advocacy Leadership Summit: Asia Pacific Regional Session 【International Conference】【panelist】
2021-10-02 Online poster presentation at the 13th conference for the Japanese Association of Health Communication 【domestic conference】【COVID19】【oral presentation】
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. 【COVID19】【All NANBYO】【domestic trend】【report】
2021-07-01 APARDO directors (2021-) are listed on the website. 【asia-pacific patient community】
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. 【COVID19】【All NANBYO】【domestic trend】【symposium】
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. 【COVID19】【All NANBYO】【domestic trend】【report】
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.【Glycogenosis type 1a】【research】
2021-05-26 Participated in the RDI membership meeting 【global patient community】【invited participation】
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. 【COVID19】【All NANBYO】【domestic trend】【report】
2021-04-30 Participated in RDD Global Steering Committee 【RDD】【invited participation】
2021-03-28 Presentation at the 5th Annual Meeting of HAE Forum 【HAE】【domestic conference】【presentation】
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" 【multi-stakeholder】【children with medical care】【report】
2021-02-11 Presentation at the 24th JTTA Annual Academic Conference 【domestic conference】【presentation】
2021-02-09 Participated the APARDO AGM 【asia-pacific patient community】【invited participation】
2021-01-23 Presentation at the Mitochondrial Disease Research Open Forum 【Mytcondrial disease】【research community】【presentation】
Year 2020
2020-12-20 Participated in Pelizaeus-Merzbacher disease and related disorders research seminar as a research collaborator 【research community】【Pelizaeus-Merzbacher disease】
2020-12-09 Presentation at the APARDO Conference 2020 【asia-pacific patient community】【presentation】
2020-11-21 Presentation at the 8th conference for Japan NANBO Medical Network 【Distal Myopathy】【domestic conference】【oral presentation】【presentation award】
2020-11-09 Our poster presented at ECRD 2020 was selected for the Selected Presentation Award and published in the Orphanet Journal. 【Distal myopathy】【International Conference】【presentation award】
2020-11-07 Organized as an executive committee organization at the Japan NANBYO Patient and Family Conference 2020 【All NANBYO】【モmoderator】
2020-11-07 Survey of Patients and Families with COVID-19 Infections: Preliminary Report is now available 【COVID19】【All NANBYO】【domestic award】【report】
2020-10-19 ASrid was offered a subsidy from the Kobayashi Aoitori Foundation grant 【children with medical caare】【subsidized research project】
2020-09-28 Presentation at World Orphan Drug Congress USA 2020【PPI】【presentation】
2020-08-19 Recommendations from overseas organizations (RDI and EURORDIS) related to COVID-19 have been updated. 【COVID19】【All NANBYO】【overseas submission】
2020-08-07 The research paper was published in the Journal of Health Sciences 【JRARE】【paper】
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 【children with medical care】【QOL】【report】
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. 【asia-pacific patient community】【patinet group database】
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 【children with medical care】【QOL】【report】
2020-05-15 Recommendations from overseas organizations (NORD and EURORDIS) related to COVID-19 are summarized. 【Distal Myopathy】【RDD】【researcher-patient】【university】【International Conference】【poster presentation】【presentation award】
2020-05-11 Recommendations from overseas organizations (NORD and EURORDIS) related to COVID-19 are summarized.【COVID19】【All NANBYO】【overseas submission】
2020-05-10 The manuscript was published in the Gene Medicine MOOK No. 35 【Mytcondrial disease】【contributed article】
2020-03-09 Participated in the evaluation committee on JPA support program 【patient association】【invited participation】
2020-02-29 Collaboration with NPO PADM to Create and Disseminate Care Instructions.【Distal Myopathy】【public relations】
2020-02-20 Presentation at RDD Mie 【regional NANBYO center】【RDD】【presentation】
Year 2019
2019-12-14 Displayed drawings made at Kids Doodle Party on 5 October 2019 【All NANBYO】【pediatric】【workshop】
2019-12-08 Participated in the pre-campaign of RDD Kochi 【regional NANBYO center】【RDD】
2019-12-01 Presentation at JPA secretary meeting 【patient association】【RDD】【report】
2019-11-16 Presentation at the general assembly of IBD network 【IBD】【annual meeting】【presentation】
2019-11-16 Presentation at The Japanese Society of Medical Networking for Intractable Diseases. 【patient group】【RDD】【domestic conference】【oral presentation】
2019-11-13 Presentation at IAPO Asia-Pacific Patients Congress in Taiwan 【global patient community】【presentation】
2019-11-09 Organized an exhibition session at the Japan NANBYO Patient and Family Conference 2019 【All NANBYO】【exhibition】
2019-10-19 Presentation at APARDO Summit 2019 in Taiwan 【global patient community】【presentation】
2019-10-05 Held "Doodle Kids Party" at Aozora Republic 【All NANBYO】【pediatric】【workshop】【art museum】
2019-09-20 Held a kick-off meeting about WINPR 【asia-pacific】【patient group database】
2019-07-27 Organized ODOD2019 workshop 【multi-stakeholders】【workshop】
2019-07-20 Participated in study meeting, "Let's learn for patients", as one of the organizers 【patients】【planning and operation】
2019-06-07 Implemented Surprise project for rare disease patient 【FOP】
2019-05-11 Presentation at Rare Diseases International meeting 【global patient community】【presentation】
2019-03-23 Participated in study meeting as one of the organizers 【patients】【planning and operation】
2019-03-02 Presentation at RDD Aozora-Republic 【patient association】【presentation】
2019-02-28 Organized introduced Oral History Project at RDD Tokyo 【university】【oral history】
2019-02-21 Participated in RDD United Nation【UN NGO】【invited participation】
2019-02-20 Participated in the roadmap launch event organized by the Global Commission 【global patient community】【invited participation】
2019-02-20 ASrid became a regular member of RDI (Rare Disease International) 【global patient community】【invited participation】
Year 2018
2018-11-17 Exhibition session was held at NANBYO Forum 2018 【All NANBYO】【exhibition】
2018-11-04 Oral presentations at the 30th Society of NANBYO Centers 【Silver-Russell syndrome】【domestic conference】【oral presentation】
2018-10-26 Report on the situation of Japan's efforts at APARDO Policy Forum & Workshop 【asia-pacific】【presentation】
2018-10-28 Oral Presentation at the Open Lecture for Citizen, 12th International BMP Conference【International Conference】【FOP】【public lecture】【presentation】
2018-10-15 Poster presentation on Rare Disease Day JAPAN at NORD breakthrough Summit 【global patient associations】【poster presentation】
2018-08-10 Yukiko Nishimura and Shun Emoto had a poster presentation at the 4th Japan Muscle Society 【Distal Myopathy】【domestic conference】【poster presentation】
2018-08-01 A Research Paper was published in the Japan Society of Clinical Trials and Research 【domestic conference】【JRARE】【paper】
2018-07-28 ASrid organized ODOD2018 workshop 【multi-stakeholders】【workshop】
2018-07-26 An article on J-RARE was published in a newsletter published by the Japan Marfan Association 【Marfan syndrome】【JRARE】【contributed article】
2018-06-01 ASrid launched the Oral History project for leaders in the NANBYO patient associations 【university】【oral history】
2018-05-12 Yukiko Nishimura and Shun Emoto had a poster presentation at the ECRD 2018, respectively 【International Conference】【JRARE】【poster presentation】
2018-04-20 ASrid was offered a subsidy from the KIRIN Foundation grant 【Silver-Russell syndrome】【subsidized project】
2018-02-24 Kunihiro Nishimura had a presentation at RDD AOZORA KYOWAKOKU, Yamanashi 【patient association】【RDD】【presentation】
2018-02-24 Shun Emoto had a presentation at RDD Mie 【regional NANBYO center】【RDD】【presentation】
2018-01-27 Shun Emoto had a presentation at the 20th annual conference for the Japanese Society for Adult Congenital Heart Disease 【Marfan syndrome】【domestic conference】【oral presentation】
Year 2017
2017-11-26 Shun Emoto gave a presentation at the Silver-Russel Syndrome patient group event 【Silver-Russell syndrome】【JRARE】【presentation】
2017-11-25 ASrid organized the exhibition session at Japan Patient and Family Conference 2017 【All NANBYO】【exhibition】
2017-09-23 Yukiko Nishimura had a presentation at a medical seminar held by SRS Network 【Silver-Russell syndrome】【JRARE】【presentation】
2017-07-22 ASrid organized ODOD2017 workshop【multi-stakeholders】【workshop】
2017-06-25 Yukiko Nishimura had a presentation at Nimokaka Club (Pediatric patients’ family group in Hanno, Saitama) 【regional patient community】【presentation】
2017-04-29 Yukiko Nishimura had a presentation at a board meeting of NPO PADM (Patient Association for Distal Myopathies) 【Distal Myopathy】【JRARE】【annual meeting】
Year 2016
2016-11-20 Shun Emoto conducted a presentation at a board meeting of Achondroplasia patient and family group 【Chondrodysplasia】【JRARE】【patient exchange session】
2016-10-10 Yukiko Nishimura and Shun Emoto gave presentations at the Silver-Russel Syndrome patient group event 【Silver-Russell syndrome】【JRARE】【patient exchange session】
2016-08-20 Masatoshi Iwasaki gave a presentation at JAMAA (Japan Marfan Association) event 【Marfan syndrome】【JRARE】【patient exchange session】
2016-05-30 Yukiko Nishimura participated in the panel discussion, ECRD 2016 【patient association】【International Conference】【panel discussion】
2016-05-30 Masatoshi Iwasaki had a poster presentation at ECRD 2016 【JRARE】【International Conference】【Poster presentation】
Status of Research Review at ASrid