Information for Patients and Parents
We are sorry . . . .
The BIMDG website is not designed for patients and parents. We encourage you to contact your local Inherited Metabolic Disease centre.
However, we have recently added TEMPLE guides (Tools Enabling Metabolic Parents LEarning) which may be helpful for parents.
Although we are not affiliated with any patient support groups, there are some websites which might be able to help.
We do not endorse any of the groups listed on this page. They are only provided as examples of where to look for information. The content of these external websites is outwith the responsibility of BIMDG, and rests entirely with the organisation running the website.
Patient Support Groups
Association for Glycogen Storage Disease (AGSD-UK)
https://agsd.org.uk/
Barth Welcome Trust
http://www.barthsyndrome.org.uk
Cochrane Cystic Fibrosis
https://cf.cochrane.org/
Expanded Newborn Screening
http://www.expandedscreening.org
Fabry Disease Support Group
http://www.fabry.org/
Galactosaemia Support Group
http://www.galactosaemia.org/
Metabolic Support UK (formerly known as CLIMB)
https://www.metabolicsupportuk.org/
Mucopolysaccharidosis Society
http://www.mpssociety.org.uk/
National Society for Phenylketonuria
http://www.nspku.org
Pompe Support Network
http://www.pompe.uk
Wilsons Disease Support Group UK
http://www.wilsonsdisease.org.uk