10 March 2022
The European Reference Networks have set up a support platform to help Rare Disease patients and their families caught by the ongoing Ukranian crisis. The adjoining link will give more information about any of the 24 networks dedicated to rare and low prevalence diseases funded by the European Commission. The ERNs members & affiliated partners are healthcare providers localized across Europes involving 25 European countries included Norway and are organizing themselves to support the victims of the ongoing war that suffer rare diseases and their families.
Regarding ERN for rare neuromuscular disorders, EURO-NMD, the Coordinator has issued the following message:
“The entire Euro-NMD coordination team supports Ukraine and wishes to express its solidarity with the Ukrainian rare disease community, in particular the Ukrainian neuromuscular disease community. We want to help our colleagues, their patients and families, and all those affected by this conflict.
On February 28, 2022, at a conference on the future of rare diseases in Europe that gathered a large number of EU health ministries in Paris, ERN coordinators as well as many personalities expressed their concerns about the situation in Ukraine and the refugees, among whom are obviously people with rare diseases who will need specific care.
This situation is devastating! It goes against all the principles we stand for non-violence, solidarity, inclusion and respect.
Do not hesitate to contact us at email@example.com if you need help.”
Teresinha Evangelista – EURO-NMD Coordinator