Patient Group Pairing | Findacure

Patient Group Pairing | Findacure The next Student Voice Prize will give students the chance to be paired with a rare disease patient group, allowing patient advocates to raise awareness of their condition amongst the clinicians of the future, share insights and build connections! Learn more and apply now!

Pediatric biobanking and engagement: Join & share practices

Pediatric biobanking and engagement: Join & share practices BBMRI‐ERIC and the Stakeholder Forum Patient Pillar are calling on pediatric & Rare Disease communities to engage in a network tackling pediatric biobanking and its ethical, legal, and societal challenges. Declare your interest now!

Awareness-Raising – IBTA

Awareness-Raising – IBTA The 15th International Brain Tumour Awareness Week is taking place from 30 October to 6 November. Find out how you can participate in awareness-raising activities!

Alpha mannosidosis: Updates

Alpha mannosidosis: Updates Are you, a family member, or someone you know living with Alpha Mannosidosis? Let them know they can connect now with others in our newest online community. If you can’t find an online community for your disease, check out the RareConnect general discussion webpage.

Rare Diseases International | Facebook

Rare Diseases International | Facebook Follow Rare Diseases International’s new Facebook page. Stay up to date with global activities and advocacy for people living with a rare disease around the world

EURORDIS webinar on the Rare2030 survey findings

Inscripción al seminario web - Zoom Don’t miss our webinar on the Rare2030 survey results taking place on 18 October! We will deep dive into the opinions of people living with a rare disease on remote and health care cross-border health care, and discuss how you can use the results in your own advocacy!