Launch of new NF2 Global Community
It is a sad fact that many people around the world diagnosed with NF2 are faced with a major lack of reliable information, access to medical professionals and opportunities to meet other people living with their condition.
RareConnect was created by EURORDIS – European Rare Diseases Organisation and National Organization for Rare Disorders, Inc. (NORD) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
CYHU have joined forces with other patients organisations in Austria, Italy, Germany, America, Canada, Brazil and Argentina to build and launch an online Global community for people affected by NF2 and Schwannomatosis. We will continue to gather partner associations from other countries around the world to reach as many people as possible.
With an excellent translation service the entire site can be viewed in English, French, German, Spanish and Italian, making it the most internationally accessible site for people living with NF2 & Schwannomatosis. You can now join the site (for free) to connect with and support others globally https://www.rareconnect.org/en/community/neurofibromatosis-type-2-and-schwannomatosis