A unique collaborative model providing supportive and self-advocacy tools to the rare disease community

Author:

Harris Juliette M.,Fish Jacqui,Griffin Jared,Hasnaoui Gemma,Stacey Clare,Ghali Neeti,van Dijk Fleur S.

Publisher

Elsevier BV

Reference36 articles.

1. Regulation, Orphan Medicinal Product. Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products. Off J 18. 15 (2000).

2. Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis;Merker;BMC Health Serv. Res.,2018

3. Needs of people with rare diseases that can be supported by electronic resources: a scoping review;Long;BMJ Open,2022

4. Rare disease education in Europe and beyond: time to act;Tumiene;Orphanet J. Rare Dis.,2022

5. Supportive care needs of patients with rare chronic diseases: multi-method, cross-sectional study;Depping;Orphanet J. Rare Dis.,2021

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