[1] Leibniz Univ Hannover, Ctr Hlth Econ Res Hannover CHERH, Otto Brenner Strae 1, D-30159 Hannover, Germany
[2] Univ Castilla La Mancha, Talavera Reina, Toledo, Spain
[3] Red Investigacin Servicios Sanitarios Enfermedade, Madrid, Spain
[4] Fundacin Canaria Investigacin Sanitaria FUNCANIS, Palmas Gran Canaria, Las Palmas Gran Canaria, Spain
[5] Univ Castilla La Mancha, Toledo, Spain
[6] Evaluat & Planning Serv, Canary Islands Hlth Serv, Santa Cruz de La Palma, CA, Spain
[7] SpainRDR CIBERER, Inst Rare Dis Res, ISCIII, Madrid, Spain
[8] London Sch Econ & Polit Sci, Dept Social Policy & LSE Hlth, London, England
[9] Natl Ctr Rare Dis, Ist Superiore SanitA ISS, Rome, Italy
[10] Centro Ric Cliniche Malattie Rare Aldo Cele Dacc, Ist Ric Farmacologiche Mario Negri, Ranica Bergamo, Italy
[11] Inst Rare Dis, Plovdiv, Bulgaria
[12] Med Univ Plovdiv, Fac Publ Hlth, Dept Social Med & Publ Hlth, Plovdiv, Bulgaria
[13] Corvinus Univ Budapest, Dept Hlth Econ, Budapest, Hungary
[14] Federacin Espaola Enfermedades Raras FEDER, Madrid, Spain
[15] Swedish Inst Hlth Econ, Lund, Sweden
[16] URC Eco Ile France, AP HP, Paris, France
[17] Univ Paris Diderot, Sorbonne Paris Cite, ECEVE, UMRS 1123, Paris, France
[18] INSERM, ECEVE, F-U1123 Paris, France
[19] Bocconi Univ, Ctr Res Hlth & Social Care Management CERGAS, Milan, Italy