As war still goes on, Ukraine faces a humanitarian crisis and rare disease patients are the most affected by the conflict. 2 million Ukrainians have a rare disease and face the sizeable challenge of meeting the complex medical needs on their own.

The EU, Eurordis, ERNs, Orphanet and all the members of the European rare diseases sector joined forces and organized everything to give displaced Ukrainian patients the best help they could: list of medical centres abroad, safe transfer of patients across Europe, access to medicines and medical equipment in Ukraine despite the destruction of vital infrastructures, list of rare disease resources for refugees and displaced persons, and much more, see

https://www.standwithukraine.how/

16th December2021 The United Nations General Assembly voted the First Reloution for People Living With a Rare Disorder

After a first adoption by consensus in November, the final text became an official United Nations Resolution with the vote during the General Assembly on 16th December.

Rare Disease International, together with Eurordis and the Non Governemental Organisations (NGO) Committee for Rare Disorders advocated relentlessly with United Nations members to elaborate the resolution “Addressing the Challenges of Persons Living with a Rare Disorder and their Families”. This hard work  has now been rewarded.

and elsewhere

Australia :  Government is funding the « RArEST » initiative for 3 years with an amount of $ (AUD)  1.9 million. This initiative is led by Universities and the Federation « Rare Voices Australia », to improve Education, Support and Training courses for Rare Diseases . (©Orphanews 16^th  November 2021)

The UN calls on France to completely change its idea of disability. They especially tackle  too « medical » approach and « systematic » institutionalisation. (© Hospimédia)

Ratification of the African Medicines Agency (AMA) Treaty. One of its priorities will be to act against sub-standard and fake medicines.

And also, the First African Summit on Rare Diseases was held in Accra (Ghana) on 1-3 December. The main theme was to engage in a dialogue between all stakeholders in the national and regional rare disease eco-system in Africa. (©Orphanews 2^nd December 2021)

In the USA : Establishment of 31 Centres of Excellence for Rare Disorders. They will cover several specialties and provide rare disease patient education, training courses for physicians, and will contribute to enhanced research on rare disorders by promoting collaboration in this field. (©Orphanews 02 Décembre 2021)

In Italy : Adoption of a National Law for Rare Diseases. This law provides a definition of rare diseases as one with a prevalence of less than five patients per 10 thousand. This definition fits in with the one used at the European level. The law also provides for the establishment of a National Committee for Rare Diseases within the Ministry of Health. (©Orphanews 2^nd December 2021)