MARFAN SYNDROME SUPPORT GROUP IRL COMPANY LIMITED BY GUARANTEE

Marfan Syndrome Support Group Irl Company Limited By Guarantee is a charitable organisation dedicated to supporting individuals and families affected by Marfan syndrome and related connective-tissue conditions throughout Ireland. The group provides a welcoming community where members can share experiences, receive friendly listening, and access up-to-date information about diagnosis, treatment options and research developments.

Key activities include a regularly published newsletter that highlights fundraising initiatives, the latest clinical trial results (such as the Atenolol versus Losartan study), and updates from conferences - for example, the 2014 Ehlers-Danlos Conference attended by Chairperson Rachel Martin. The Support Group also promotes public awareness by distributing educational posters to local GPs and maintains an active online presence through social media and a secure donation platform on idonate.ie.

Operating from its base in Ireland, the organisation works closely with international partners such as the Marfan Foundation (USA) to bring valuable resources and a sense of belonging to anyone navigating the Marfan journey.