Marfan Association UK

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Map for Marfan Association UK

Organisation details

Description

Answerphone: 01252 617 320.

Marfan syndrome is an inherited disorder of connective tissue which affects many organ systems, including eyes, lungs, heart, skeleton and blood vessels.

The Association:
- supports patients and their families through the trauma of diagnosis via a national network
- writes and distributes educational literature for the public and medical sector
- fosters research projects
- holds an annual Marfan Information Day.

There are 25 national support groups, and the Association founded the Marfan European Support Network in 1991. We also raise awareness of the problems associated with visual impairment.

Annual membership: £18 (UK) or £25 (overseas).

Publication: 'Marfan in Touch' newsletter twice yearly.

Registered charity no 802727.

Services offered:

  • Support groups

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  • This organisation was verified on 5 April 2017