The parents and sufferers of RTD are working together to raise awareness of this syndrome not only amongst suspected sufferers, but within the media and the medical community.
We hope that by reaching out, we may be able to help not only our children and those already diagnosed but to find others whom have no diagnosis and perhaps need some guidance to get them to the point of diagnosis and correct care.
We as a group are proud to support each other through the tough times we face on a daily basis. We share our stories, information and we give each other the confidence to ask questions and to challenge where needed.
All our journeys at times have produced fear, isolation, sadness and sheer frustration but together we have added support, laughter, togetherness, learning and friendship to this long road that we travel.
Please join us on our Facebook page: http://www.facebook.com/pages/BVVL-Support-Group/146154392226927?ref=hl
Or contact us directly by email for further help or information at: firstname.lastname@example.org