Where to Get Support

You are not alone.

We understand how terrifying and isolating it can feel to face a diagnosis of a rare, lifelong condition. 

As the umbrella patient organisation for all Inherited Metabolic Disorders, we can provide bespoke support, advice and information to patients and their families.  Whether you have found us shortly after diagnosis or at a later stage, and would like to speak to someone about a condition, or be connected with another family to share experiences please get in touch.  Our well-trained, caring team is here to help.

There are also a number of other patient organisations and support groups focused on specific conditions, who can also help with support, advice and information:

Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN)
ALD Life
ALD Life provides practical support, advice and information to patients and families with ALD and AMN, raises awareness and improve public education into both conditions and aims to advance medical research into finding better treatments.

Alkaptonuira (AKU)
AKU Society
AKU Society aims to transform the lives of AKU patients through patient support, community building and medical research.

Batten Disease
Batten Disease Family Association
The BDFA offers informed guidance and support to families and the professionals who work with them, as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure.

Hypophosphatasia (HPP)
Soft Bones UK
Soft Bones UK aims to raise awareness of HPP, to determine early diagnosis, and to support and advocate those diagnosed with HPP and their families in the UK.

Mitochondrial Disease
The Lily Foundation
The Lily Foundation supports people whose lives are affected by Mitochondrial Disease, raises awareness and funds research into prevention, diagnosis and treatment.

Mucopolysaccharide Disease (MPS)
MPS Society
The MPS Society provides professional support to individuals, families and professionals affected by MPS and related Lysosomal Storage Diseases throughout the UK.

Niemann Pick
NPKU is dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases by raising awareness, providing practical and emotional support, advice and information and facilitating research into potential therapies.

Phenylketonuria (PKU)
The NSPKU exists to help and support people with PKU, their families and carers and actively promotes the care and treatment of PKU, working closely with medical professionals in the UK.

Urea Cycle Disorders
UCD Support Group
A friendly and supportive group on Facebook for those affected by Urea Cycle Disorders in the UK.  This is a ‘closed’ group which you will need to request to join, and only the other members of the group will be able to see your posts, ensuring a safe and private space.