Funded project

Assistance for children with rare diseases and their families

Spain

Between 6 and 8% of the world population suffers from a rare disease.

Funded thanks to:
  • Donors
  • Total raised
    100%raised
    • Condis clients 28.058€
  • Direct beneficiaries 1.150

    Those people who have naturally benefited from the project's interventions.

  • Indirect beneficiaries 2.875

    Those identifiable people who will potentially recieve an effect from the project's activities.

Federación española de enfermedades raras

Budget

  • Staff 28.057€
  • Total 28.057€
28.057€

Description

Rare or less frequent diseases are those that have a low prevalence in the population. To be considered rare, each specific disease can only affect a limited number of people. Specifically, less than 5 out of every 10,000 inhabitants.

However, rare diseases affect a large number of people. According to the World Health Organization (WHO), there are about 7,000 rare diseases that affect 7% of the world's population. In total, it is estimated that in Spain there are more than 3 million people with rare diseases. These people suffer from isolation and loneliness due to a rare or infrequent disease. They are alone, without resources and do not know where to turn.

FEDER works for a world in which people suffering from a rare disease have the same opportunities in life as the rest of society, regardless of the rarity of their disease.

Their main goal is to support families with a rare disease. They accompany them in their day-to-day life by helping in the search for a diagnosis, in the search for a second medical opinion of experts in their pathology, in psychological support to the family, in legal advice and by putting them in contact with different people affected, and trying to make them aware of their illness.

Activities

  • Design and send specific information about very specific diseases.
  • Hold meetings between two families to share experiences, day-to-day situations and to recognize in another family their same concerns to erase the perception of feeling alone.
  • To assist families in a consultation by giving a specialized answer to their needs and doubts about their rare disease.

Who will benefit?

Through this project it will be possible to provide care to children suffering from rare diseases and their families.

Project objectives

To defend, protect and promote the rights of the more than 3 million people with rare diseases in Spain.

Create spaces to share families’ needs and propose solutions to improve their hope and quality of life.

Updates & Links

FEDER (web)

This website uses cookies. If you continue browsing we will consider you have accepted their use . Obtain more information.