Urgent call for volunteers to help people with a rare disease from Ukraine

The situation in and around Ukraine continues to evolve at a fast pace, and the needs of people with a rare disease affected by the war are changing.  Even so, we are starting to see some patterns and examples of where people need support.

Do you have some knowledge of or experience with a rare disease?

Do you also have any of the below?

  • Leadership or organisational experience in working with refugees or crisis management?
  • Russian or Ukrainian language skills?
  • Experience working with a helpline, or helping rare disease patients to solve problems with access or resettlement?


If yes please send an email to helpukraine@eurordis.org here with

  • Your name and contact details
  • The disease(s) you have experience with
  • Any languages you speak
  • A brief outline of your experience and how you want to help
  • Your general time availability (how much time, what times of day)


We will do our best to match you with an organisation or task where you can help.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases