Edition of 20 March 2020

On RDD, the European Joint Programme on Rare Diseases (EJP-RD) launched a video to celebrate the organisation’s work, in collaboration with its partners, to develop a rare disease ecosystem to improve patients’ access to healthcare system.

Canada joined the RDD commemoration as well and several events were organised, for example in Montréal, where the McGill University Health Centre's Consortium for Rare Disease Research held a half day multidisciplinary on rare disease clinical and research programs, and focused on cross-sectional network opportunities for researchers. Other events also took place in Calgary (information and experiences of people living with rare diseases were shared), Burlington (proclamation for rare diseases), Toronto (an event on what makes you rare), and Saguenay.

In Serbia, on 27 February, the National Organisation for Rare Diseases (NORBS) organised a stand-up comedy in Belgrade to raise awareness amongst the public and to explain the challenges facing rare disease patients, and their need for social support and access to healthcare. The RDD was also the occasion for NORBS to acknowledge its alignment with the Programme and Action Plan for rare diseases adopted by the Serbian government in December 2019.

Interdisciplinary sessions took place in Armenia and were organised by the Foundation on Support on Children with disabilities. An informative session on several types of rare diseases was also organised by two national organisations (Armenian Hematology Association and the Armenian Association for Molecular Immunology and Allergology) for young doctors, researchers, medical residents, and patients. Another event also took place, a conference on hematological and immunological rare diseases.

Findacure, a British charity organisation whose work is focused on building rare diseases community through research and development of treatments, organises regularly a “Student Voice” contest to give voice to students in medical studies who care about rare diseases and are willing to work on changes. For the 2020 “Student Voice” edition, Findacure partnered with Medicis 4 Rare Diseases, and the following four reported runners competed: Anna-Lucia Koerling, the winner, whose article, No Friends 1, talks about Neurofibromatosis type 1, a disease with multiple spinal tumors that David, a patient followed by Anna-Lucia as a medical student, is suffering from. The story concerns two people, the student doctor, and the patient, who met in such special moments, and managed to create a very strong bond between them two.

The others three runners are Anneliese Ng, from the University of Western of Australia (Inequities of healthcare provision between Indigenous and Non-Indigenous Australians), Sandy Ayoub from St Georges University of London (Dual Deprivation : Understanding the Psychological Burden that Coexists with the Physical Struggles in Individuals with Rare Diseases and their Caregivers), and Muhummed Shaikh from University of Leicester (Improving Rare Disease Recognition through Undergraduate Medical Education). This “Student Voice” contest was organised with the Orphanet Journal of Rare Diseases (OJRD), and the students’ articles were published in the OJRD journal.