Progetto finanziato

Say Stop to rare diseases

Spagna

Every day, more than 3 million families in Spain suffer isolation and loneliness for having a rare disease. They feel lonely, without resources and do not know where to turn.

Finanaziato grazie a :
  • Donanti
  • Totale finanziato
    100%finanziato
    • LetsBonus clienti 1.077€
  • Beneficiari diretti 60

    Quelle persone che in maniera naturale hanno tratto beneficio dalle azioni portate avanti dal progetto

  • Beneficiari indiretti 195

    Quelle persone identificabili che ricevono un effetto potenziale dalle azioni portate avanti dal progetto.

Federación española de enfermedades raras

Preventivo

  • Personale 1.077€
  • Totale 1.077€
1.077€

Descrizione

FEDER works for a world in which people with a rare disease have the same opportunities than the rest of society, regardless of the rarity of this disease. 

Its mission is to accompany families with a rare disease in their day to day, to help them in their needs: finding a diagnosis, to find a second medical opinion from experts in their pathology, psychological support, legal advice and support from other families affected.

Attività

  • Provide specific information from singular diseases to more than 30 families.
  • Hold meetings between two families to share experiences and everyday situations to allow families to recognize their same concerns and erase the perception of feeling alone.
  • Provide specialized attention to solve family needs and doubts about the rare disease.

Chi ne trarrà beneficio?

World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families. With the collaboration of LetsBonus users, we hope to give support to more than 30 families with a rare disease.

Obiettivi del progetto

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

Create spaces for sharing needs of families and propose solutions to improve life expectancy and quality of life.

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