herenciageneticayenfermedad: junio 2022

Frontiers | Valuing the “Burden” and Impact of Rare Diseases: A Scoping Review | Pharmacology The new article co-written by EURORDIS: “Valuing the ‘Burden’ and Impact of Rare Diseases: A Scoping Review”, is out now! Read the article to find out why a more holistic approach in rare disease studies is needed to fully assess the psychological, physical, and socio-economic impacts of living with a rare disease.

World Orphan Drug Congress USA 2022 | 11 - 13 July 2022

World Orphan Drug Congress USA 2022 | 11 - 13 July 2022 Join us at The World Orphan Drug Congress from 11 - 13 July in Boston, MA! Together with EURORDIS speakers Yann Le Cam, Simone Boselli, and Edith Gross, discuss how to enable better rare disease research and improve patient access. Contact us to benefit from free passes for patient advocates at eurordis@eurordis.org.

EURORDIS-Rare Diseases Europe publishes a Joint Statement with EFPIA on proposals to improve patient access to medicines - EURORDIS - The Voice of Rare Disease Patients in Europe

EURORDIS - The Voice of Rare Disease Patients in Europe Have you heard that the EURORDIS-EFPIA Joint Statement on proposals to improve patient access to medicines has been published? Read the press release now and get a grasp on how access to orphan medicines can be improved across Europe.

Funding & Research | Erdheim-Chester Disease

Funding & Research | Erdheim-Chester Disease Are you a qualified researcher conducting studies on Erdheim-Chester Disease and other Histiocytic Disorders? Apply for the ECD Global Alliance grant before the deadline of 13 July 2022 and be awarded up to 50,000 USD in funding for your research project!

European Patient Advocacy Groups (ePAGs) - Join the European Patient Advocacy Groups (ePAGs)

European Patient Advocacy Groups (ePAGs) Do you want to make the voice of your rare disease community heard at the European level? If you are interested in participating in The European Reference Networks (ERNs) as a European Patient Advocacy Group (ePAG) advocate, don’t forget to apply now!

Nomination process: EURORDIS Black Pearl Awards

Nomination process: EURORDIS Black Pearl Awards Celebrate the achievements of your star of the rare disease community by nominating them for the next EURORDIS Black Pearl Awards! Visit our website to learn more about the 12 award categories and submit a nomination now, or enter yourself!

Course 1: Introduction to the European and international research landscape - EURORDIS Open Academy

Course 1: Introduction to the European and international research landscape - EURORDIS Open Academy Who are the main actors in rare disease research? What are the ways in which your organisation can be supported? Learn more about European funding programmes for research and innovation, the International Rare Diseases Research Consortium, and much more in our new online course.

Register - ECRD2022

Register - ECRD2022 ECRD 2022 calls for a new rare disease policy framework. Join our Open Plenary Session on 27 June to hear from Stella Kyriakides, EU Health Commissioner, Dr Hans Kluge, WHO Europe Regional Director, Jakub Dvoracek, Czech Deputy Minister of Health and Members of the European Parliament, Frédérique Ries & Stelios Kympouropoulos.

Rare Barometer Voices - Recruitment

Rare Barometer Voices - Recruitment Last chance! The Rare Barometer survey on diagnosis closes today! If you haven’t already done so - participate in the survey and share it with your network! Together we can make the voice of the rare disease community stronger!

Cambridge Rare Disease Showcase | Beacon

Cambridge Rare Disease Showcase | Beacon Tickets are now available for Beacon’s in-person Cambridge Rare Disease Showcase, taking place on 6 July 2022! Register now to take part in face-to-face networking opportunities and lightning talks, and discuss the projects that are driving change for the rare disease community.

RareConnect | Communities

RareConnect | Communities RareConnect is now looking for individuals who live with ROHHAD Syndrome to join their newly-created online community! Visit their website to stay connected, and find your rare community to share resources and receive support!