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)

Barth Welcome Trust

Cochrane Cystic Fibrosis

Expanded Newborn Screening

Fabry Disease Support Group

Galactosaemia Support Group

Metabolic Support UK (formerly known as CLIMB)

Mucopolysaccharidosis Society

National Society for Phenylketonuria

Pompe Support Network

Wilsons Disease Support Group UK