Meeting people with the same *rare* condition as you and discussing common concerns is precious and cathartic. We are creating (in-person) local support groups across the country where you can chat to someone similarly situated, swap tips and make MarFriends!
(The groups are still being formed so the information below is incomplete. Do please email [email protected] if you would like to join a bubble or create one of your own.)
SOUTH WEST ENGLAND: Bath/Bristol
Audrey and Jodie lead a support group in the Bath and Bristol area and the first of their meetings took place on 9 November. This is the photographic proof.
As a glimpse into the lives of those who lead this group, here is the link to Audrey's story. Audrey's husband Greg, and daughter Josie, have Marfan syndrome. Josie's diagnosis of Marfan saved her father's life!
To join Audrey and Jodie's friendly group, 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.
To join Charlotte's group, simply email [email protected]
EAST MIDLANDS
Group to be created
WEST MIDLANDS: Birmingham & Coventry
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.
KENT
Susan has recently created a small friendly Marfan support group in Kent and here is her story:
I was diagnosed with Marfan Syndrome seven seven years ago following an acute ascending aortic dissection. Prior to that I had never heard of the condition, but have since made it my business to find out as much as possible about it.
I am looking to start a support group for Kent and would be happy to hear from anyone one who would like to join me for tea, chat, and information gathering. Please contact [email protected] in the first instance. Thank you.
To join Susan's Group, email [email protected]
MANCHESTER
SCOTLAND: EAST COAST
WALES
LONDON
NORTHERN IRELAND
LANCASHIRE
SCOTLAND: WEST COAST
