Rare Disease links
There are a great many associations and initiatives worldwide supporting people affected by rare diseases, and raising awareness about rare diseases. The following are especially relevant to our research or close to our hearts.
Please note that our listing of humanitarian initiatives is not intended as political commentary.
TREAT-NMD call for healthcare professionals
The TREAT-NMD neuromuscular network are seeking specialist neuromuscular healthcare professionals to help patients leaving Ukraine
https://treat-nmd.org/newsletter/healthcare-professionals-to-help-patients-leaving-ukraine/
EURORDIS urgent call for volunteers
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 988 rare disease patient organisations in 74 countries.
If you can help, please send an email to helpukraine@eurordis.org
World Duchenne Organization DMD Emergency Programme
Through it's DMD Emergency Program, the World Duchenne Organization is collecting funds to provide resources and support to patient organizations that are coordinating refugees and local families with Duchenne and Becker muscular dystrophy: https://www.facebook.com/donate/757410268566407/5236261596418810/
"Orphanni Synytsi" Charitable Foundation
Charitable foundation supporting people with rare (orphan) diseases in Ukraine
Ulster-RARE
"research groups across the university are combining their expertise to form an alliance against Rare Diseases (Ulster-RARE)."
NIRDP
Not for Profit Company and a Northern Ireland Registered Charity.
"Our Vision is that no one is disadvantaged because of the rarity of their condition."
EURORDIS
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 988 rare disease patient organisations in 74 countries.
"We are the voice of 30 million people affected by rare diseases throughout Europe."
MNDA
"The MND Association focuses on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland."
AFM-Telethon
"AFM-Telethon, created in 1958 by a handful of parents taking up arms against the ignorance and powerlessness of medicine and science in the face of the neuromuscular diseases affecting their children, has a single goal: to find treatments to cure rare diseases."
World Duchenne Organization
"The World Duchenne Organization is a global umbrella organization of national patient organizations, dedicated to finding a cure and viable treatments for DMD."