I think I may have OTC Deficiency who do I Contact?
If you recognise any symptoms of Ornithine Transcarbamylase Deficiency (OTC] within yourself or your child you should contact your Local GP immediately for a referral to see a inherited metabolic diseases specialist.
I Cannot stress enough the seriousness of this condition and unfortunately many medical professionals won’t have metabolic awareness and will under estimate the condition despite medical protocols and n.i.c.e guidelines being place which sadly it seems some medical professionals feel fit to ignore, which leads to catastrophic consequences.
Useful inherited metabolic diseases contacts within the UK
For contact Information for Ramachandran, Radha a Consultant in Adult inherited metabolic diseases at the guys and st thomas nhs Hosital in London please Click Here
For contact Information for the Children’s service for Inherited metabolic diseases covering south London, Kent, Sussex, Surrey and beyond with outreach clinics as far as Plymouth, Cambridge and Norwich at Evelina London Children's Hospital please Click Here
Other UK Websites with OTC Deficiency Information
The National Urea Cycle Disorders Foundation is a non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. NUCDF is a nationally-recognized resource of information and education for families and healthcare professionals. To visit The National Urea Cycle Disorders Foundation website please Click Here
On facebook there is a small closed group called the "Urea Cycle Disorders Support Uk" created by people who have OTC Deficiency, it has a wonderful community of warm hearted and helpful people, if your happy to follow the ground rules you can request to join if you have a facebook account, this wonferful group can be found if you Click Here