Rare diseases
80% of rare diseases have a genetic origin © iStock / Svisio
By: Caroline Paré Follow
2 min
The 14th edition of World Rare Disease Day takes place on Sunday February 28.
This event aims to raise awareness among the general public and decision-makers about these little-known pathologies and their impact on the lives of patients.
Publicity
A disease is said to be "rare" when it affects less than one in 2,000 people, ie for a country like France: less than 30,000 people.
One in twenty people is affected by a rare disease in France, and there are nearly 7,000 different ailments that fall within this framework.
80% of them have a genetic origin.
What is a rare disease?
How to live with it?
How to improve screening and management?
Where is the research?
Dr Laurent Frenzel,
hematologist and head
of the hemophilia center at the Necker-Enfants Malades
Hospital in Paris, a hospital twinned with the Dakar National Blood Transfusion Center in Senegal
Diane Wattrelos
, mother of young children.
Suffering from a rare neurological disease Vascular Pain in the Face since the age of 14 years.
Instagram account:
les_maux_en_couleurs
Pr Alexis Elira Dokekias
, Full Professor of Hematology, Head of the Hematology Department of the Brazzaville University Hospital in Congo, Director General of the National Reference Center for Sickle Cell Disease and Rare Diseases "Antoinette Sassou Nguesso".
President of the African Society of Hematology.
Nefissetou
, Mauritanian mother of four children with hemophilia
Marie-Pierre Bichet,
Vice-President of
Alliance rare diseases
, specialist in therapeutic education
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Health priority
1. Rare diseases
Health priority
2. Rare diseases