Arbejdede dernæst i den franske Sammenslutning for Neuromuskulære Sygdomme (AFM) som særlig rådgiver, hvor han bl. a. bidrog til at fremme en sundhedspolitik for sjældne sygdomme, oprette den franske Alliance Maladies Rares, en national paraplyorganisation for 70 patientforeninger, og rådgive Eurordis (European Organisation for Rare Disorders), der har hjemsted i Paris.
He later joined the French Neuromuscular Diseases Association (AFM) as Special Advisor to stimulate public health policy on rare diseases, to create the French Alliance Maladies Rares, a national umbrella organisation of 70 patients associations, and to advise the European Organisation for Rare Disorders (Eurordis), based in Paris.