Supporting Those With Rare Diseases
Mission:
In the Galician community, there are more than 7,000 rare diseases that are estimated to affect 200,000 people. Fegerec (Federación Gallega de Enfermedades Raras y Crónicas) was founded in 2009 with the aim to improve the common health needs of people who suffer from a rare disease in Galicia. Its main focus is to share the knowledge of rare diseases as well as their prevention, treatment, and care of people who suffer from them. For that, Fegerec counts on the great commitment of a professional team, who contribute voluntarily to fundraise and improve the resources and services of the organization. The foundation also hopes to enhance and maintain better conditions of public health care institutions through their work.
Why It Matters:
Everyone deserves to live as happily and as healthily as possible. Sadly, more than 3 million people suffer from a rare disease in Spain. A patient with a rare disease waits an average of 4 years to obtain a diagnosis and in 20% of cases, it takes 10 or more years to achieve a conclusive one. Nearly 30% of people diagnosed with a form of these rare diseases do not receive any support or treatment, and in nearly 20% of the cases, patients do not receive appropriate treatment. TEAM LEWIS supports Fegerec and its services to assist with the particular needs of each patient and family. Patient support will continue throughout their life, ensuring that they know they are cared for and have the essential knowledge at their disposal.