This paper is in the following e-collection/theme issue:

Formative Evaluation of Digital Health Interventions (2803) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1781) Participatory Medicine & E-Patients (829) Participatory Design and Participatory Research (363) User-centred Design Case Studies (640) Epidemiology (173) Participatory Epidemiology and Surveillance (123)

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

Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study

Authors of this article:

Roxana Radu1 Author Orcid Image ;   Sara Hernández-Ortega2 Author Orcid Image ;   Oriol Borrega3 Author Orcid Image ;   Avril Palmeri4 Author Orcid Image ;   Dimitrios Athanasiou5 Author Orcid Image ;   Nicholas Brooke1 Author Orcid Image ;   Inma Chapí3 Author Orcid Image ;   Anaïs Le Corvec6 Author Orcid Image ;   Michela Guglieri4 Author Orcid Image ;   Alexandre Perera-Lluna7 Author Orcid Image ;   Jon Garrido-Aguirre7 Author Orcid Image ;   Bettina Ryll8 Author Orcid Image ;   Begonya Nafria Escalera2 Author Orcid Image
Article Authors Cited by (10) Tweetations (20) Metrics

Journals

  1. 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
  2. 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
  3. 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
  4. 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
  5. Pearce E, Majid A, Brown T, Shepherd R, Rising C, Wilsnack C, Thompson A, Gilkey M, Ribisl K, Lazard A, Han P, Werner-Lin A, Hutson S, Savage S. “Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis. JMIR Formative Research 2024;8:e64343 View
  6. Callen E, Clay T, Cogan W, Black W, Jones J, Mabachi N. Community Social Networking for Ehlers–Danlos Syndrome. Health Education & Behavior 2025;52(2):199 View
  7. Babaee M, Vahidi Ara S, Vahidi H, Jafari N, Zeinali V, Farahbakhsh N, Sadr S, Khanbabaee G, Tabatabaii S, Ahamdabadi F, Miryounesi M, Hashemi Nazari S, Rayegani S, Taghdiri M, Karimzadeh P, Nasehi M, Boland Nazar N. Framework and overview of the Pediatric Spinal Muscular Atrophy Registry Program of Iran. The Egyptian Journal of Neurology, Psychiatry and Neurosurgery 2024;60(1) View
  8. Dimond R, Lewis J. “My full-time unpaid role”: Understanding the (extra)ordinary work of founders of rare disease organisations. Social Science & Medicine 2025;372:117958 View

Books/Policy Documents

  1. Biz C, Bragazzi N. Big Data Analytics for Healthcare. View
  2. Rajavel A, Sella R. Rare Genetic Disorders. View