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Objetivo de 5,000 €

Supporting research is giving hope and diagnosis to those who need it most

In Spain, more than 3 million people live with a rare disease or are seeking a diagnosis. Currently, only 20% of identified conditions are being researched, which means that families wait an average of 6 years to achieve a diagnosis and only 6% have a specific treatment.

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SaludDesde: 01/04/26Hasta: 15/05/27
Driving research: diagnosis and treatment for Rare Diseases
Objetivos de la campaña

The main objective is to promote the development of research into rare diseases in Spain in order to foster early diagnoses and effective treatments, thereby reducing the investment gap and improving the quality of life of affected individuals and their families.

Descripción

The Spanish Federation for Rare Diseases (FEDER) acts as a bridge between families in need of answers and the scientific community. With more than 25 years of experience, its mission is to ensure that no condition is forgotten due to lack of resources or knowledge.

The project consists of an Annual Call for Research Grants that selects, under strict excellence criteria from the Carlos III Health Institute (ISCIII), the most promising scientific projects in Spain. The funds raised are directly allocated to finance the work of research teams pursuing three critical milestones: identifying the origin of diseases without a name (diagnosis), developing new therapies (treatment), and understanding the emotional impact on the family environment (psychosocial research).

Through this call, your donation becomes laboratory hours, researcher mobility, and technical resources. It is not a one-time aid, but a boost lasting up to 18 months that allows scientists to advance in conditions that would otherwise receive neither private nor public investment. Ultimately, this project transforms solidarity into scientific evidence so that postal code or the rarity of a disease do not determine the right to health.

Actividades
  • Launch of the call: Design and dissemination of the annual grant call through digital channels and press.

  • Technical support: Assistance and support to organizations and research teams throughout the entire application process.

  • Scientific evaluation: Selection of projects by ISCIII to ensure quality and ethical standards.

  • Agreement management: Signing of agreements with beneficiary centers for the start of the research.

  • Monitoring and dissemination: Scientific and financial monitoring of the projects over 18 months and communication of the results obtained.

¿Quién se beneficiará?

The campaign directly benefits people with rare diseases (especially children and young people) who are seeking a diagnosis or treatment. With the 2026 budget, a potential impact on thousands of people is estimated; for example, support for a single specific condition such as Porphyria can benefit around 4,700 people in Spain. In addition, it strengthens the scientific community and the healthcare system.

Más información y enlaces

feder (web)