Joanne is the Mother of Chantelle, who is 16 years old. Chantelle has been diagnosed with MED13L Syndrome, and they both live in Norwich, East Anglia. Joanne has accepted to be our UK correspondent and her duties will be:
- To raise awareness about MED13L Syndrome in the UK towards the national rare disease organisations ( Rare disease UK, Genetic alliance UK, NORD...) and the social and medical sectors.
- Be the first contact for UK families.
Joanne is doing a 10k run through Run Norwich on 5/8/18 with her Brother and Sister, to help fundraise and raise awareness for our MED13L association. Let's support Joanne and her family!