The 24 European Reference Networks are mobilizing to support Ukraine and particularly its rare disease community.
Our key actions :
- Creation of a common ERN website with contact information to reach each ERN: https://www.erncare4ua.com/
- Dedicated e-mail address: ukraine.epilepsies@epi-care.eu
- Ensuring to patients coming from Ukraine a fast access to rare diseases specialists / referrals when needed
- EpiCARE medical teams and the ILAE are in contact with pharmaceutical companies reg. medication shortage
- Each medical team has the necessary expertise to provide advice on treatment
- When required, EpiCARE offers to HCPs a conf. call with experts to discuss diagnostic and treatment alternatives
- EpiCARE has contacts to help translate essential medical documents into nearly all EU languages
- The Patient Advocates Group and EURORDIS can provide information on nearby patient associations willing to provide support to families and patients from Ukraine
You can find more information and support on the following websites:
- Common ERN Website : www.erncare4ua.eu
- International League Against Epilepsy: https://www.ilae.org/ukraine-support
- International Bureau of Epilepsy: https://www.ibe-epilepsy.org/statement-on-ukraine/
- EURORDIS: https://www.eurordis.org/content/statement-eurordis-ukraine
And here are resources that can be useful:
- Letter from the Members of the European Parliement: “Call to protect and support the Ukrainian people living with a rare disease”
- ILAE Communication: Crisis response in Ukraine: Securing medication and care for people with epilepsy through national and international efforts
- ILAE Seizure resource guide: available in english, ukrainian and russian
Torie Robinson, from the Epilepsy Sparks Insights podcast, did a podcast serie on the Ukraine situation, interviewing neurologists still in Ukraine, the Internation Bureau for Epilepsy’s CEO, an epileptologist from Poland who is getting drugs into Ukraine…
Watch all the Ukraine Special podcasts here and find out more about how we can all help and contribute.
