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 22, 2022) 


2022年

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 DD 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

 

2021年

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 releasedAll 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

2020年

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 Conferencepresentation 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

2019年

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 communityinvited participation

2019-02-20 ASrid became a regular member of RDI (Rare Disease International) 【global patient communityinvited participation

2018年

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 ConferenceInternational 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】

2017年

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

2016年

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