Useful Information - Other

Social Media Support Groups

Marfan Trust - Facebook
https://www.facebook.com/Marfan-Trust-102179834771903
Our own facebook UK based group providing access to medical advice, support and research from the Marfan Trust. 

Marfan Syndrome UK Forum - Facebook
https://www.facebook.com/groups/marfanforumuk
Support group for UK residents with Marfan Syndrome and related connective tissue disorders with over 1,000 members.

Marfan Syndrome UK - Facebook
https://www.facebook.com/groups/Marfansyndromeuk
A general support forum focusing on lifestyle advice and comparing symptoms. Its 3,000 plus UK based followers are of all ages.

The Marfan Forum - Facebook
https://www.facebook.com/groups/marfanforum
A global community, mostly from the US and the UK with 5,600 plus followers, providing support for those with Marfan syndrome as well as other connective tissue disorders (Loeys-Dietz and Ehlers-Danlos).

The Marfan Support Group - Facebook
https://www.facebook.com/groups/marfansyndrome/
A general support forum focusing on lifestyle advice and comparing symptoms. Its 13,000 plus international followers are of all ages.

TALLternative Retail - Facebook
https://www.facebook.com/groups/3140260522661124/
A group to help find clothing and shoe retailers that proportionally fit the taller woman

Marfan Specialist Support Organisations

The Marfan Trust
http://www.marfantrust.org/; Support Helpline: +44 (0) 333 011 5256; E: [email protected]
Our own UK based Marfan syndrome specialist charity offering support and advice and funding its own research into Marfan syndrome.

The Marfan Foundation - Major US Charity
https://www.marfan.org/
Large US Marfan syndrome charity which emphasises support and awareness. Webinars are accessible to all, both live and post event.

Marfan Europe Network
https://www.marfan.eu/
A coalition of Marfan syndrome patient organisations within Europe, aiming to support and encourage each other by exchanging and sharing information.

The Marfan Syndrome Support Group (Ireland)
https://www.marfan.eu/
A small registered charity (No: CHY 13401) in the Republic of Ireland, established in 1999. The Group provides emotional and financial, (if required), support to patients and families impacted by Marfan syndrome and Loeys-Dietz syndrome in Ireland. Awareness of both conditions is also a huge priority of the Group. They encompass the entire island, and have some members living in Northern Ireland.

Aortic Dissection Awareness UK & Ireland
https://aorticdissectionawareness.org/
Aortic Dissection Awareness UK & Ireland (registered charity no. 1198617) is the award-winning national patient charity for Aortic Dissection in the UK & Ireland. Founded by a small group of Aortic Dissection survivors in 2016, the charity grew rapidly to become the national patient association in 2018 and a registered charity in 2022. They are the voice of Aortic Dissection patients and their families in the UK & Ireland.

Other Support Organisations

British Heart Foundation - Large UK Charity
https://www.bhf.org.uk/
Pre-eminent UK heart charity providing support and research in relation to heart disease and disorders.

NHS
https://www.nhs.uk/conditions/marfan-syndrome/treatment/
NHS information and advice regarding Marfan syndrome.

Pain UK
https://painuk.org/
An alliance of charities providing a voice for people in pain, founded in November 2011 and registered as a charity in January 2012. It supports charities dealing with all manner of painful conditions, "from head to toe".

The Specialised Healthcare Alliance
http://www.shca.info/index.php
A coalition of patient-related groups and corporate members with a strong record of campaigning on behalf of people with rare and complex conditions in need of specialised care. These services cover a wide range of conditions, many of which could affect any one of us at some point in our lives.

Children's and Teenager's Support Charities

Kidscape UK
https://www.kidscape.org.uk/
Founded in 1985, Kidscape promotes the anti-bullying message and child protection issues.

Respect Me (Scotland)
https://respectme.org.uk/
Works with all adults involved in the lives of children and young people to give them the practical skills and confidence to deal with children who are bullied and those who bully others.

Anti-Bullying Alliance UK
http://www.anti-bullyingalliance.org.uk/
Based at National Children's Bureau, the Anti-Bullying Alliance is a coalition of organisations and individuals working together to stop bullying and create safe environments in which children and young people can live, grow, play and learn.

The Cyber Foundation UK
https://www.cybersmile.org/
A nonprofit organisation committed to digital wellbeing and tackling all forms of online bullying and abuse. It works to promote kindness, diversity and inclusion by building a safer, more positive digital community. It's website also has a help centre to provide help in relation to specific groups and topics.

Other Suggested Resources

Genetic Disorders UK
https://www.geneticdisordersuk.org
A large charity that covers a variety of genetic disorders and has a lot of useful resources.

Genetic Alliance UK
https://geneticalliance.org.uk/
A national alliance of over 200 organisations which support children, families and individuals affected by genetic disorders. It works towards improving the lives of people affected by genetic disorders through making information and resources available to all.

The Council for Disabled Children (National Children's Bureau) (CDC)
https://councilfordisabledchildren.org.uk
The CDC works to make a difference in the lives of children with disabilities and children with special education needs. It does this by influencing Government policy, working with local agencies to translate policy into practice and producing guidance on issues affecting the lives of disabled children.

For Children

Treehouse At Number Nine
https://treehousegenies.com/
Illustrated stories with colourful, bright and fun characters designed to keep children engaged and to learn about young people who have rare genetic disorders. It was funded by Jeans for Genes/Genetic Disorders UK.