| We are part of a worldwide voluntary community helping boys and families affected by Barth syndrome and working towards a cure. We provide up to date information to families and medical professionals. We provide a caring community for families and a means of being able to communicate with each other via a private e-mail forum We also organise specialised Barth clinics, conferences and fund research.
E-mail: info@bathsyndrome.org.uk Website: www.barthsyndrome.org.uk | 
