This morning our director, Marian Corral, participated in the Multidisciplinary Conference on Rare Diseases organized by the Hospital 12 de Octubre in Madrid, in collaboration with Kyowa Kirin.
The event was opened by Dr. Julio Pascual, Medical Director of the Hospital Universitario 12 de Octubre, Dr. Pilar Sánchez-Pobre, Deputy Manager of Organizational Planning and Innovation of SERMAS belonging to the Ministry of Health of the Community of Madrid and Iván Silva Romero, General Manager of Kyowa Kirin in Spain.
The event was held on the occasion of the International Day for Rare Diseases and the attendees were able to learn about the experience and work, day by day, of the professionals of the Hospital 12 de Octubre on important issues such as: the impact and psychological approach to rare diseases, the genetic origin of rare diseases, the importance of early diagnosis, clinical care and networks and referral center.
Marian focused her presentation on presenting some challenges in access to orphan drugs, commenting on several proposals focused on speeding up diagnosis, training for professionals, the use of new technologies, updating and unification of registries, expansion and unification of screening and the need to have a legislative-regulatory framework that facilitates and speeds up access to treatments.
In the last panel of the morning, several associations of patients with rat diseases took part and were able to share their first-hand experience and some of their proposals for improving their care both inside and outside the hospital and how new ways of collaboration with the associative movement can be established.