Get to know all the testimonies of the initiative #youthwithcourage posted on June-July:

  • Mina lives with a rare disease called DiGeorge’s syndrome or velo-cardio-facial syndrome. When she was a teenager, she was also diagnosed with scoliosis idiopathic.
  • Mikel, 22 years old , has a degenerative neuromuscular disease, called Spinal Muscular Atrophy Type II.
  • Alex is the administrator and regional delegate for the association CMT France, which helps patients suffering from Charcot Marie Tooth disease, the disease he also suffers..
  • Alicia is a young woman of 22 years old who suffers from muscular dystrophy. Her mother points out that society doesn’t worry about rare diseases or muscular dystrophies, and she ask for bigger support.
  • Samuele, 21 years old, studies Mechanical Engineering at La Sapienza and is passionate of hockey. He also suffers Duchenne muscular dystrophy (DMD).


The initiative, co-funded by the Erasmus+ Programme of the European Union, aims at the creation of a European network of European foundations, institutions, and entities in order to promote the exchange of experiences and good practices. The partners of the initiative are:

  • Fundación Isabel Gemio (Spain)
  • Federación Española de Enfermedades Neuromusculares (Spain)
  • Parent Project APS per la Ricerca sulla Distrofa Muscolare (Italy)
  • Charcot-Marie-Tooth et Neuropathies Peripheriques (France)
  • Uniamo Federazione Italiana Malattie Rare (Italy)


Second transnational meeting of the Erasmus+ YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE

Toulouse was the chosen venue to hold the second transnational meeting of the Erasmus+: YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE. The partners met last Friday, July 22nd, to analyse the progress of the project and to coordinate the following steps.

Aiming to improve the statistics of the IGTV: YOUTH WITH COURAGE, the partnership decided to develop a newsletter with all the information of the project so far and to launch a campaign on social media to encourage people suffering from rare diseases to share their own story. Besides, the consortium will launch a questionnaire to evaluate the impact of the IGTV: YOUTH WITH COURAGE in three different target groups: young people with rare diseases beneficiaries, youth technicians and volunteers and the European society.

The third transnational meeting of the project will be held in Rome, on October 24th. Follow us on social media to know more information about the initiative: