eNews: 12.05.21

The Voice of Rare Disease Patients in Europe

#Resolution4Rare: Global campaign for the first UN Resolution on Persons Living with a Rare Disease   EURORDIS-Rare Diseases Europe, in collaboration with Rare Diseases International and the NGO Committee for Rare Diseases, has developed a toolkit to support the call for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families. Vulnerability, exclusion and inequity are the reason why the challenges of people with rare diseases need to be positioned as a human rights issue and addressed by the international community at the global level. To ensure the adoption of the UN General Assembly Resolution, the global rare disease community needs to come together and advocate for change at the local, national and international levels.

RARECONNECT There are 4 new online communities this month! Join the Familial Hypomagnesemia community to connect with others and share experiences around the world!

RARE 2030: FORESIGHT IN RARE DISEASE POLICY We're about to launch Rare 2030 Action – our campaign for European action on rare diseases. Watch this video on the conclusions of the Rare 2030 Foresight Study that will be the basis of our work!

OPEN ACADEMY Register now for the next EURORDIS Digital School’s webinar on Community Engagement on May 25, 2021 04:00 PM CET. Learn how to initiate and sustain discussions, create and curate content and host engaging events and activities on your rare disease online community.

GET INVOLVED The EU Directive on patients’ rights in cross-border health care is up for evaluation! Share your views on how the Directive has facilitated access to health care abroad for you and how it has strengthened European cooperation in the area of rare diseases.

WHAT'S NEW AT EURORDIS? EURORDIS is hiring a Compliance and Budget Manager – apply by 9 May 2021.

OTHER RARE DISEASE NEWS Make sure to read EURORDIS’ latest press release on equitable access to COVID-19 vaccines for vulnerable populations in Europe and worldwide!

EURORDIS EVENTS Register for EURORDIS’ webinar: Deep-dive into integration of ERNs: Part I on July 1st 14.00-17.30 CET. Part of a series of webinars to look into 3 key areas that are relevant to benefit from ERNs at national level.

INTERNATIONAL Check out the new free toolkit to support the call for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease (PLWRD) and their Families.

MEMBERS' CORNER Register now for an EDS ECHO Summit Series virtual event focused on the Rarer Types of Ehlers-Danlos Syndromes on May 29, 2021.

ORPHAN MEDICINES 5 medicines for approval and 1 hybrid orphan medicine.

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This publication (or activity) has been funded with support from the European Union's Health Programme. This material only reflects the views of the author, and funders cannot be held responsible for any use which may be made of the information contained herein.