The Marfan Trust - Supports those with Marfan syndrome and their families - - Provides educational information to raise awareness of Marfan syndrome - - Undertakes medical research to enable better treatment for patients -
For many patients, the Hypermobility Service at University College London Hospitals NHS Foundation Trust (UCLH) is a vital lifeline, but this lifeline may not extend to future generations.
The Ehlers-Danlos Support UK, Hypermobility Syndromes Association and the Marfan Trust are concerned by UCLH’s decision to temporarily close its hypermobility service to all new referrals. We are collaborating in an effort to surmount this challenge, which has significant implications for people with Marfan syndrome and other heritable connective tissue disorders. Here is the background.
Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at:
c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY.
Contact us at [email protected] or by phone on + 44 (0)333 011 5256