Published on in Vol 5, No 3 (2021): March
Preprints (earlier versions) of this paper are
available at
https://preprints.jmir.org/preprint/22695, first published
.
![Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study](https://asset.jmir.pub/assets/3ff6011e021bbb4a774f804aca943e4b.png 480w,https://asset.jmir.pub/assets/3ff6011e021bbb4a774f804aca943e4b.png 960w,https://asset.jmir.pub/assets/3ff6011e021bbb4a774f804aca943e4b.png 1920w,https://asset.jmir.pub/assets/3ff6011e021bbb4a774f804aca943e4b.png 2500w)
Journals
- Denton N, Mulberg A, Molloy M, Charleston S, Fajgenbaum D, Marsh E, Howard P. Sharing is caring: a call for a new era of rare disease research and development. Orphanet Journal of Rare Diseases 2022;17(1) View
- Neff M, Storf H, Vasseur J, Scheidt J, Zerr T, Khouri A, Schaaf J. Identifying project topics and requirements in a citizen science project in rare diseases: a participative study. Orphanet Journal of Rare Diseases 2022;17(1) View
- Antoniadou V, Hadjipanayis A. Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus. Orphanet Journal of Rare Diseases 2023;18(1) View
- Nevin S, McGill B, Kelada L, Hilton G, Maack M, Elvidge K, Farrar M, Baynam G, Katz N, Donovan L, Grattan S, Signorelli C, Bhattacharya K, Nunn K, Wakefield C. The psychosocial impact of childhood dementia on children and their parents: a systematic review. Orphanet Journal of Rare Diseases 2023;18(1) View