The Spanish Federation for Rare Diseases (ERDF) and the Association for Rare Disorders Totana "D'Genes" show tomorrow, September 30, a photography exhibition with the aim of raising awareness Burgos rare diseases, their issues and actions from ERDF and over 160 member associations made all over Spain.
The exhibition comprises 70 photographs of different people with a rare disease.
In it, reflects the life of all persons who have participated in the last three ERDF photographic competitions.
This exhibition has been on the Board Gregory Cebrián de Totana (Murcia), in the Exhibition Hall "The Slaughterhouse" in Madrid and soon will move to the city of Murcia Abanilla.
The Minister for Health and Social Policy, Trinidad Jiménez, will open tomorrow the State referral center of Care for People with Rare Diseases Burgos.
This center will be integrated into the network of research centers linked to the Instituto de Salud Carlos III and also be part of the European network of rare disease research.
The aim of this center, a pioneer in our country, is none other than promoting and coordinating research, specialty care and socio-professional training on rare diseases in Spain.
In particular, the future center will develop a dual mission: first, national reference model is intended for research, promotion and support of other resources in the sector and, secondly, develop direct and specialized care for people suffering from the disease their families.
To complete the research work, the developers have planned collaborations with public and private entities, specific programs and projects to care for sufferers and their families.
The national referral services are emerging as specialized resources for research, study and knowledge of rare diseases, as well as training professionals working in this sector and the dissemination of knowledge to improve the situation of these people and their families.
Reference services are expected to remain divided in the following areas: a first information, research, documentation and evaluation, which will be responsible for developing studies and collate all information concerning this matter.
The second is the area of training, technical assistance and international cooperation.
It will manage all training, technical assistance to various public and private and social awareness on rare diseases.
In addition, the future center will provide people with rare disorders and their families a number of specific services and specialized direct care where these people can participate and share experiences with other with other patients and their families, as well as professionals and experts .
Also planned is the organization of respite care programs where similar conditions affected may participate in training, education and leisure.
In total, the center will have 64 beds for people with rare disorders and their families to develop temporary direct care programs and respite to be determined.
There are currently about 7,000 diseases that have this consideration.
