TOFS is proud to announce that it is supporting EURORDIS Rare Disease Europe’s campaign to protect the most vulnerable people caught in the Ukraine conflict.
EURORDIS will facilitate a coordinated effort with European Rare Disease Federations and will support patient organisations in Ukraine to understand the challenges they are facing and to help policy makers and the international community understand the challenges people living with a rare disease face on the ground.
Within the OA/EA (Oesophageal Atresia) patient community, EAT (Esophageal Atresia Global Support Groups) is reaching out to offer support to the Ukrainian national rare disease organisation and various Ukrainian family members who are members of EAT member associations.
TOFS is one of the founding members of EAT and along with its international colleagues, would like to be able to help.
Diane Stephens, CEO of TOFS said, “We believe the current situation in the Ukraine should not undermine the reality that the needs of people living with a rare disease are real, huge and unmet. We are proud to support this cause and have donated 1000 EUR to help EAT provide necessary equipment and consumables to help people in the OA/TOF community who are caught up in this terrible position.”
The German EA support group KEKS has also offered to host family members at its facility in Stuttgart and to provide logistical support to transport a family from the Polish-Ukraine border.
Further reading: European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies (ERNICA) website: https://ern-ernica.eu/news-events/news/support-to-ukrainians/