Cardio-Facio-Cutaneous Support Group

Support group details

Group Name
Cardio-Facio-Cutaneous Support Group
Group Description
We support parents and friends of anyone diagnosed with CFC or children and adults with similar syndromes eg Costello Syndrome or Noonans Syndrome by providing information about where to seek medical help, schooling, and who to contact for up coming conferences etc.
Who can Join
Any interested parties are welcome to join - parents ,families, friends, carers, or CFC sufferers. We also welcome professionals such as medical practitioners, nurses, social workers who may require information for patients or for their own interest.
Contact hours
By phone 10 am till 3 pm Monday to Friday. All other contact by email please.
Where we meet
Gibbings Street Northam
Town/Suburb
PERTH
Postcode
Services
Phone support Online and Facebook support Hard copy guide to Cardio-facio-cutaneous syndrome
More Info
Cardio facio cutaneous syndrome is a newly diagnosed syndrome founded in 2006 by American genetic specialists. The meaning of the syndrome is: cardio - heart facio - facial features cutaneous - skin involvement Symptoms may include epilepsy, apnea, feeding problems, mental delay, growth delays, speech delays, eyes problems, strabismus, short sightedness, long sightedness, blindness, very little sparse hair, no or very little eye brows and body hair - very curly hair when it grows. Not every child has all these symptoms. 99% of children with CFC are fed by gastric button. People are sometimes initially misdiagnosed with Costello or Noonan Syndrome. Usually first sign of a problem is feeding issues from birth. CFC was originally thought to be sporadic, but cases of family's with 2 or 3 people with CFC have been identified. Genes found : Braf, Mek1,Mek 2.
Group Focus
Cardio-facio-cutaneous syndrome
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
(08) 9622 7097
Contact the group by email

Email Contact