Not-so-rare rare diseases! A partnership to boost care
Rare diseases, not so rare after all!
With 7,000 rare diseases, 3.3 million people affected in France, and situations that are often complex and dramatic, general practitioners are key players in the care of these patients.
France is held up as an example in Europe for its policy in the fight against rare diseases. Significant progress has been made to promote research, information and access to expert and innovative 3rd-line medicine! To date, over 2,200 rare disease centers have been accredited in France.
Between this cutting-edge medicine and the day-to-day lives of patients and their families, we need to strengthen the role of front-line, local medicine. How can we better inform and support general practitioners and primary care teams?
A partnership to boost care
To make it easier for general practitioners to practice their profession, and to improve the care of people affected by the disease, three players have decided to work together on targeted communication initiatives: the Collège de la Médecine Générale, the Filières de Santé Maladies Rares and Maladies Rares Info Services (see below).
This initiative will inform GPs about these pathologies, and publicize the specific and general schemes available to help them refer patients and facilitate their care. The highlight of this partnership will be the launch of the “Animated Infographic on Rare Diseases” at the opening of the Congrès de Médecine Générale(www.congresmg.fr) on Thursday April 4.