Saving lives through education, advances in treatment and finding a cure for Barth syndrome
Private email forum for families
Our listserv is a private, password and firewall- protected cyber community of experts and families. Join to 'talk' to other affected families and medical experts and ask your questions. You can also access many topics in our archives.
- General brochure (read version / print version)
- Newly diagnosed brochure (read version / print version)
- Education Guide
Care Plan for school - use the template to create a personalised Care Plan
- Anaesthesia Guidelines for Barth syndrome patients
- Heart failure (currently being updated - May 2016)
- Neutropenia in Barth syndrome (currently being updated - May 2016)
- Feeding problems and nutrition
- Healthy Eating Guidelines for teenagers (added in May 2016)
- Fertility information
- Preventing low blood sugar during night time and preventing the loss of muscle mass – using cornstarch/cornflour before bed
- How to manage episodes of diarrhoea
- Genetics of Barth syndrome (currently being updated - May 2016)
- Growing Up with Barth syndrome
- Care Plan for children at school – – ideal for school staff, holidays abroad etc.
Our Barth Syndrome newsletter is published twice a year and contains stories from all around the world. Click on the last few editions for full copies and please contact us if you would like to be added to our mailing list.
You may be entitled to claim benefits which can help offset the costs of caring for a child with special needs. The Barth Syndrome Trust has teamed up with Contact a Family, the leading UK charity providing information for parents who have a child with a disability.
Please visit Contact a Family for details of the following:
• Disability Living Allowance and other benefits
• Tax Credits
• Special Educational Needs Advice Service
• Short Breaks
There is also a wealth of other information on the site, much of which is directly relevant to parents of a child with Barth syndrome. Check out their “Cash Counts” area, Contact a Family’s one stop shop for benefits advice and money saving tips.
We are working on creating some specific resources for young people with Barth syndrome who are moving towards adulthood so please check back soon.