Townes-Brocks Syndrome Support Group

Support group details

Group Name
Townes-Brocks Syndrome Support Group
Group Description
The Townes-Brocks Syndrome Group is an International Support Network created to help support those affected by the syndrome. It is an online group only. It was created due to the need to connect and share with those who have the very rare genetic disease, and their families, in a safe environment. There is minimal information regarding the syndrome on the internet. Some is correct and some is not. Because it is so rare, many medical professionals are not aware of the condition, or how extreme it can be. Fortunately, Professor Juergen Kohlase of Freiburg, Germany keeps the group updated with new publications etc. The group is not amalgamated with any other TBS group. However, health organisations ie NORD USA, list our online details as a go between.
Who can Join
Private & confidential group for people or parents dealing with the genetic diagnosis of Townes-Brocks.
Contact hours
Where we meet
On-line group
Closed on-line group. Free to join group.
More Info
Group Focus
Townes-Brocks Syndrome is a rare genetic disorder present at birth.
Area serviced
Far North Qld, North Qld, Western Qld, Central Qld, Wide Bay, Sunshine Coast, Darling Downs West Moreton, Brisbane North, Brisbane South & Logan, Gold Coast
Phone contact
(02) 6925 5841
Contact the group by email

Email Contact