Children living with a rare disease face a diagnostic odyssey that typically lasts 5 years or longer & entails seeing a multi-disciplinary group of experts.

We must provide immediate and long-term solutions to newborns affected by a rare disease. How? 👉https://www.globalrarediseasecommission.com/MemberBlog/BlogPost/3

DEADLINE EXTENDED! 🚨

You have until Friday afternoon to submit your good practice.

💡 Inspire other rare disease patient advocates
🥇 Get a chance to present your idea live at the Eurordis Membership Meeting #EMM2021 on 12-14 May.

👉http://l.eurordis.org/EAr

Orphan medicinal products (OMP) 💊are used for the diagnosis and treatment of rare diseases.

Join us today at 16:00 CET, to learn more about the current state of play of OMP manufacturing and ways to improve access to orphan medicines in Europe.

👉http://l.eurordis.org/fK9

Despite scientific advances👩‍🔬 over the years, many people with rare diseases still lack access to effective therapies.

The Revision of the EU🇪🇺 general pharmaceutical legislation is an opportunity to bring about change.

👉Read our position http://l.eurordis.org/QJP

World Orphan Drug Congress USA Virtual being held on 28 Wednesday, April has an amazing panel discussion at 15:00 CEST!

👥"Outlook on European market access strategies for rare diseases"

Register for your #free pass to listen in and ask your questions! https://rb.gy/f78fpd