With the 'I'm not a unicorn' campaign, RaDiOrg reminds us that, even though they are often invisible, rare disease patients really do exist...unlike unicorns. This national campaign is being carried out for the first time for the benefit of the 8 Belgian rare disease hospitals. Find out what is at stake, its objectives and how the F101G is participating in it.
Since 2019, Ludivine represents the Belgian Marfan Syndrome Association (ABSM) and Fondation 101 Génomes to RaDiOrg. RaDiOrg is the umbrella organisation for rare disease patient organisations in Belgium. Ludivine has been invited to join RaDiOrg's Board of Directors where she holds the position of Vice-President (Team RaDiOrg).
Under the leadership of its director, Eva Schoeters, RaDiOrg has launched this year the campaign '...'.I'm not a unicornto raise public awareness of rare diseases (#notaunicorn).
For the first time, CHU Liège, UZ Gent, Erasmus Hospital, UZ Brussel, Cliniques Universitaires Saint Luc, UZ Leuven, Grand Hôpital de Charleroi and UZA - the 8 Belgian 'rare disease function' hospitals - have united around the campaign initiated and the message carried by RaDiOrg (8 Centres).
Fourteen pharmaceutical companies (Boehringer Ingelheim, Chiesi, Gilead, Janssen, Novartis, Pfizer, Roche, Sanofi, Sobi, Takeda, UCB, Ultragenyx, Biogen, Bristol Myers Squibb), pharma.be (the general association of the pharmaceutical industry) and the National Lottery support the #notaunicorn campaign (Sponsors).
The aim of the campaign is to raise public awareness:
- That there are more than 6100 rare diseases
- That drugs are only available for 5% of them...
- That patients wait an average of four and a half years for a diagnosis...
- That 75% of people with rare diseases are children
- That there are 500,000 people living with rare diseases in Belgium
- That research in the field of rare diseases must be supported
Although they are often invisible, rare disease patients are not unicorns. They really exist and they are all around us. These non unicorns have a lot to offer us and to teach us about what humanity is (and not only scientifically)..
It's up to us to hear them and find ways to fund research!