CIENCIASMEDICASNEWS: noviembre 2021

Health Summit | African Summit On Rare Diseases Register for the African Summit on Rare Diseases on 1- 3 December 2021 (Hybrid event online and in Accra, Ghana). Organised by Rare Disease Ghana Initiative in partnership with RDI to straighten African patient organisations and regional collaborations.

Faire un don en ligne pour l'AFM-Téléthon.

Faire un don en ligne pour l'AFM-Téléthon. France’s annual AFM Téléthon, taking place on 3-4 December, brings together millions of people to help everyone living with a rare disease and their families get access to diagnosis and treatment. Make your contribution today with a donation.

Guideline on registry-based studies | European Medicines Agency

Guideline on registry-based studies | European Medicines Agency The European Medicines Agency has published guidance on registry-based studies to which EURORDIS has contributed, providing key methods and regulatory practices to pharmaceutical companies for the planning and conduct of registry-based studies.

General discussion: Updates

General discussion: Updates We're helping individuals living with ultra-rare diseases find others living with the same condition in the global RareConnect general discussion community. Check it out and connect with others living with your rare disease now!

1st International Rare and Paediatric Disease Conference - Virtual Event 18-19/11/2021 - 1st International Rare and Paediatric Disease Conference - Virtual Event 18-19/11/2021

1st International Rare and Paediatric Disease Conference - Virtual Event 18-19/11/2021 - 1st International Rare and Paediatric Disease Conference - Virtual Event 18-19/11/2021 Register now for the 1st International Conference on Rare Diseases and Paediatric Research, taking place on the 18-19 November, to discuss the challenging topic of research in paediatric and rare diseases.

EURORDIS - The Voice of Rare Disease Patients in Europe - Debate in the European Parliament: Europe’s Action Plan for Rare Diseases

EURORDIS - The Voice of Rare Disease Patients in Europe On 24 November Members of the European Parliament will hold a debate on Europe's Action Plan for Rare Diseases. Reach out to your local MEPs to ensure coordinated and multi-level support for change!

EURORDIS Photo Award - EURORDIS Black Pearl Awards

EURORDIS Photo Award - EURORDIS Black Pearl Awards The EURORDIS Photo Award is back for 2022! We invite you to showcase your favorite or most poignant photo telling a visual story of what life with a rare disease means for you and your family, and share it with the whole rare disease community.

Share your reason for action on rare diseases! | Rare 2030 Campaign

Share your reason for action on rare diseases! | Rare 2030 Campaign Final call for you to share YOUR reason why we need Europe’s Action Plan for Rare Diseases, before submissions close at the end of November! Join the 1,670 people who have submitted their reason and help amplify the voice of the rare disease community.