Edition of 14 March 2022

This ressource connects patients from Ukraine with a rare disease with organisations and hospitals, members of the European Reference Network (ERN), with the aim to provide the specialised medical support they may need during this emergency.  If you live in Ukraine or you are a refugee affected by the war in Ukraine and have been diagnosed with a rare disease and need specialised medical support, you can make a request through the website. Professionals working in NGOs or hospitals and who are in contact with a patient who has been diagnosed with a rare disease or there is a high suspicion he/she has a rare disease can also make a request. The Hub team will process the request together with the ERN and will get in touch to try to give you the aid you may need.

UPDATE: The link to the resource previously hosted at "rarediseaseshub4ua.org" has been updated to the resource hosted by "www.ohmatdytfund.org". The Center for Rare Diseases (HUB) at the charitable fondation "Ohmatdyt is Healthy Childhood" was launched thanks to the initiative of EURORDIS, European Reference Networks (ERN), the Children's Hospital in Barcelona, the European Organization of Children's Hospitals (ECHO) and with the approval of the Ministry of Health of Ukraine and the European Commission in December 2022, having previously been hosted by the Children's Hospital in Barcelona.

Rare Diseases Hub Ukraine (via Ohmatdyt Foundation)

Orphanet provides a directory of centres of expertise in Europe, including those participating in European Reference Networks for rare diseases, for those looking for information on where to seek expert advice or treatment in neighbouring countries. The directory can be searched by disease name, by country and can be filtered by type of management or if the centre treats adults or children.

• Search for a centre by disease name
• Map of European Reference Networks

Orphanet provides a directory of patient organisations in Europe, as well as alliances/federations of patient organisations in Europe. These can be searched by disease name and by country.

• Search for a rare disease patient organisation
• Search for a rare disease patient alliance

Orphanet also provides a list of rare disease helplines by country.

• Rare disease helplines

Patients can also find Emergency Guidelines for their disease that can be highly valuable in emergency situations via the disease's information page or through this list:

• Orphanet Emergency Guidelines