Meeting people with the same (rare) condition as you and discussing common concerns is precious and cathartic. We are creating local support groups across the country where you can chat - in person! - to someone similarly situated, swap tips and make MarFriends!
(The groups are still being formed and so the information below is incomplete. Do please email [email protected] if you're interested in joining a bubble or becoming a team leader.)
SOUTH WEST ENGLAND: Bath/Bristol
Audrey leads a support group in the Bath and Bristol area. To join, please email: [email protected]
SOUTH COAST: Portsmouth/Southampton
Charlotte Nason has created a local group for the Portsmouth/Southampton area. Charlotte's daughter, Amiyah, has Marfan syndrome and Charlotte has since become an expert in the condition. She is a wonderful ambassador for the Marfan Trust.
MIDLANDS: Birmingham
Lovely Dawn Butler leads a group in Birmingham. Meet Dawn.
Hello,
My name is Dawn Butler. I am 50 years old and I am a mom of two. My daughter Jodie is 27 years old and my son Daniel is 24.
The three of us have Marfan syndrome.
I live in Birmingham and I have helped families in the Birmingham area for a number of years. If you feel you need some help or you just need an ear to listen I am always available.
If you'd like to join Dawn's group, then email here: Support in Birmingham.
