Association Julien NOHL

 

NOHL is:

- 2,000 new people affected each year in the West

- 80% of people affected are men

- la plus fréquente des maladies mitochondriales

- une maladie génétique orpheline

 

Julien est atteint de la forme la plus sévère de la maladie. Il a perdu la vue en 3 mois... Il a eu la chance d'intégrer un protocole médical l'ayant permis de gagner grandement en autonomie dans son quotidien.

 

The idea of creating the association came to him during the 2019 Telethon: indeed, as a great witness, he was invited to several programs (RMC, France 5, France 2, etc.) and interviewed by Le Parisien. During this experience, he realized that his testimony helped others. He therefore wishes that the other patients can be accompanied so that they do not find themselves in the same distress and loneliness as him after the diagnosis, which is due to the absence of information and structures around this disease.
 

The objectives of the associationJulien NOHLare :

- be able to communicate more widely

- talk about the disease to make it known

- create a structure for exchanges and mutual aid between patients

- help and advise people affected in their administrative and medical procedures

 

Since February 2020, the association has welcomed its godchildren. Its first beneficiaries are Thibault, Maryvonne, Loïse, Damien and others along the way.