We have received a letter by Mikola Snurnikov, president of the Ukrainian aniridia association, describing the current situation in his country.
It is very painful to read that aniridia patients cannot get regular examinations and access to care and that their life has been devastated by the war. At the same time, it is comforting and also touching to learn that people are helping each other in this terrible situation and that the local association offers support as much as possible.
Aniridia Europe invites all the national associations to support Ukrainian patients that might be refugees in their countries in getting access to medical care and treatments, remembering that they are considered equal to EU citizens by EU regulations.
See at: https://ec.europa.eu/regional_policy/funding/care_en
Mutual support between patients is fundamental. In the field of rare diseases, where only a long and determined work can keep the interest on aniridia among thousands of rare diseases (never take this for granted), the only thing we can really do for our children is to work all together, supporting each other beyond the boundaries.
Gino Strada, an Italian doctor and the founder of Emergency, the NGO active in many war scenarios to save people and promote peace, used to say: “Patients always come first”. Let’s keep this in mind.
To contact Mikola Snurnikov: ns76@ukr.net
