About 500 people this year 2014-2015 Comprehensive Project for People with Rare Diseases benefit that develops in the Multidisciplinary Center "Celia Pérez Carrión de Tudela" located in Totana.
Of these, 102 people, including children and adults from different parts of the region representing over 70 different rare diseases receive direct care, will benefit about 190 service information and guidance and is expected to be about 180 indirect beneficiaries ie families affected by different pathologies.
The center, operated by the Association of Rare Diseases D'Genes and the Association of Family and Affected by Lipodystrophy (AELIP) offers a comprehensive portfolio of services to its users, including physical therapy, social services, psychological services, including reflexology, cognitive stimulation, speech therapy, hydrotherapy, speech therapy and respite services.
Among the objectives of the Multidisciplinary Center "Celia Pérez Carrión de Tudela" include offering a comprehensive service to people affected by rare diseases and their families to improve the quality of life of these and contribute to integration in your environment.
Thus, it seeks to encourage development of autonomy, communication skills and self-esteem of patients;
rehabilitate and encourage physical, communicative, cognitive and educational deficiencies that present those affected;
and create living spaces that enhance the relationship with their environment affected, contributing to community integration.
It lacks public funding and is funded entirely from fees paid partners AELIP D'Genes and thanks to the activities of organized jointly and parents of both associations, as well as other charitable initiatives from different entities and develop partnerships.
One will take place this Sunday September 28th (18: 00h).
The collection of the National Championship game League Second Division B will face the Catholic University of Murcia Football Club and Cádiz CF will go entirely to the Association for Rare Diseases National D'Genes and ALS Association (tickets at 5 euros ).
Moreover, solidarity piggy banks will be installed in Condomina during the meeting for those who want to collaborate.
"Such initiatives bring hope to people suffering from a rare disease," noted Juan Carrión, president of D'Genes at the launch party.
"It's a work of social assistance", he noted, for its part, José Luis Mendoza, president of the Catholic University of Murcia.
5 out of 10,000 inhabitants
This course also D'Genes has convened its first scholarship program, aimed at facilitating the use of therapeutic services offered to those families affected by rare diseases that prove to have economic difficulties in taking user fees.
Rare diseases are those that have a low incidence in the population.
To be classified as rare, each specific disease can affect only a limited number of people.
Specifically when it affects less than 5 per 10,000 inhabitants.
There are thousands of rare diseases.
To date, they have found 6-7000 rare diseases.
Seven percent of the Spanish population, approximately three million people, has one of these 7,000 low frequency diseases in the world, while in the Murcia region are affected more than 85,000.
