Although by definition of the EU a rare disease affects fewer than 1 in 2000 people, rare diseases altogether affect up to 600 million people worldwide. Rare disorders are usually severe, chronic and disabling and require specialized and long-term care. In most cases, the diagnosis is an essential step for an adequate health care support. However, since they are rare, they are usually neglected and many patients remain mis-diagnosed and consequently have poor prognosis. The three-day AGYA conference in Tunis thus aimed at raising awareness of health care professionals, decision makers, the general public and civil society organizations for rare diseases.
On the first day of the conference, public health professionals, decision makers and civil society representatives coming from Algeria, Egypt, Germany, Libya, Mauretania, Palestine, Tunisia and UAE discussed about the characteristics of rare diseases and the challenges related to their diagnosis and care. On the second day, the general public including patient’s support groups enlarged the spectrum of perspectives provided at this public outreach event. Alongside the conference program, a competition for students was organized in various educational institutions, including for instance a painting competition at a local primary school. The conference day concluded with a networking reception and an award ceremony for the students. The last day of the conference was dedicated to laboratory visits at the Institut Pasteur in order to familiarize students with the current research performed on rare diseases.
The Rare Disease Day takes place on the last day of February each year. Every year, more than a thousand events are organised worldwide, mostly to raise awareness on a local or national level. By organising the international conference in Tunis, AGYA members Olfa Messaoud (Instiut Pasteur Tunis) and Ahmed Hegazy (Charité Berlin) contributed an opportunity for a transnational exchange about best practices and innovative approaches between Arab and German scholars, medical professionals and civil society and patient organisations.