Making universal health coverage a reality for people living with a rare disease

The current pandemic underscores the importance of ensuring universal health coverage (UHC) for everyone, including people affected by rare diseases.

In 2019, UN Member States committed to UHC that is inclusive of rare diseases. Now it is time to make this a reality. At the end of 2019, Rare Diseases International (RDI) signed a memorandum of understanding with the World Health Organization (WHO) and preparations are now underway for the establishment of a WHO Collaborative Global Network for Rare Diseases.

From September, RDI and EURORDIS will also launch a campaign to encourage their member patient organisations to advocate at the national level for the implementation of UHC that is inclusive of rare diseases. Read more on how you can get involved! 

RARECONNECT

Connect with others living with ASH1L-related disorder 

Watch Ilaria Galetti explain why she became an ePAG advocate for her European Reference Network

Apply now – EURORDIS Winter School on Scientific Innovation & Translational Research, Paris, 12-16 April 2021

Announcement: Chan Zuckerberg Initiative Rare Disease Day grant awarded to amplify the rare disease voice across borders & diseases

Have you seen a film, read a book or listened to a radio show that does a great job of raising awareness of rare diseases? Nominate it for an International Media Award!      

Registration open: 30th ERTC online workshop 'Newborn Screening: Shaping the future', 15 & 16 October

EURACTIV article: Rare diseases need more centralised processes within the EU

NORD request for research proposals on pseudomyxoma peritonei & neuroendocrine cell hyperplasia of infancy

World Patient Safety Day (17 September 2020) – share your patient safety story

Ehlers Danlos syndrome webinar, organised by the French Union of ED Syndromes, 11 September

Academia developing medicines for rare diseases to receive free EMA scientific advice

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