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 (UK)

Barth Welcome Trust

Climb (Children living with metabolic disease)

Cochrane Cystic Fibrosis & Genetic Disorders Group

Expanded Newborn Screening

Fabry Disease Support Group

Galactosaemia Support Group

Mucopolysaccharidosis Society

National Society for Phenylketonuria

Pompe Disease Pages

Save Babies UK
Save Babies UK provides support for those affected by Krabbe disease and works to advance Newborn Screening in the UK

Wilsons Disease Support Group UK