Rare pathology patient associations subsidize scientific studies, offer support and show their fight to society and politicians.
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When the patient pays for the investigation of his illness
When the patient pays for the investigation of his illness
When the patient pays for the investigation of his illness
Rare pathology patient associations subsidize scientific studies, offer support and show their fight to society and politicians.
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What is not covered by the general, economic or commercial interest is covered by the interest of the relatives. They have no choice. This is the situation that surrounds the rare diseases, those that affect one person per 2,000 inhabitants. The families of these patients have learned that associations are the only way, or the best way, to get governments, pharmaceutical companies, and researchers to pay attention to them. In the last decade in particular, these associations have played a crucial role not only in raising funds, but also in raising awareness of rare diseases, creating support networks for families who have a patient with this type of disease, and even lobbying politicians.