The City of Totana and delegation in Murcia of the Spanish Federation of Rare Diseases (FEDER) presented the first Toolkit that this entity has edited and offers general information of the 16 associations that provide resources and services to patients with Few common diseases and their families in this region.
The Councillor for Social Care, Josefa Maria Sanchez, the national president of FEDER, Juan Carrion, the delegate of ERDF in Murcia, Fina Martinez, responsible for Associative Management ERDF Fide Miron, presented this initiative in the hall of the totanero Consistory.
The guide includes an overview of each of the partnerships established in the region who work with patients of rare diseases, where their phone numbers, emails and websites are offered.
Entities are Affected by Ectodermal Dysplasia, Spanish for Congenital Adrenal Hyperplasia, Families and Affected lipodystrophy, Molinense Rare Diseases, Arnold Chiari malformations, SOS Children's Aid National for Growth Problems, Rare Diseases and Other Developmental Disorders Graves "D'Genes" Physically Handicapped Molina de Segura and Vega Media, Retina Affected Region of Murcia, Psoriasis Patients, Myasthenia of Spain syndrome Agelman, Phelan-McDermid Syndrome, Bone Displaseas Minority and Vascular Ehlers Danlos .
The guide advises portfolio of services and projects FEDER offers in different policy areas, such as political action, social action, training and awareness, visibility, partnership management and innovation.
In the Region of Murcia, there are currently over 85,000 people living with rare diseases, and more than three million throughout Spain.
This tool is essential to disseminate the services offered by the different associations operating in the Region of Murcia, which has been decentralized in recent years;
and collects the "strength" of associations working in the field of rare diseases, they said.
ERDF is an organization founded in 1999 nonprofit whose mission is to fight for the rights and interests of those affected by rare diseases to improve life expectancy and quality of life;
and has in Murcia with Information and Guidance Service (phone 968/420 287).
