Social Media Support Groups
Marfan Trust - Facebook
Our own facebook UK based group providing access to medical advice, support and research from the Marfan Trust.
Marfan Syndrome UK Forum - Facebook
Support group for UK residents with Marfan Syndrome and related connective tissue disorders with over 1,000 members.
Marfan Syndrome UK - Facebook
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
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
A general support forum focusing on lifestyle advice and comparing symptoms. Its 13,000 plus international followers are of all ages.
TALLternative Retail - Facebook
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 syndome.
The Marfan Foundation - Major US Charity
Large US Marfan syndrome charity which emphasises support and awareness. Webinars are accessible to all, both live and post event.
Marfan Europe Network
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)
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.
Other Support Organisations
British Heart Foundartion - Large UK Charity
Pre-eminent UK heart charity providing support and research in relation to heart disease and disorders.
NHS information and advice regarding Marfan syndrome.
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
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
Founded in 1985, Kidscape promotes the anti-bullying message and child protection issues.
Respect Me (Scotland)
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
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
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
A large charity that covers a variety of genetic disorders and has a lot of useful resources.
Genetic Alliance 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)
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.
Treehouse At Number Nine
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.