What We Do

Our compassionate and experienced team delivers many support services to patients and families to meet their varying needs, including:

Practical Advice and Support

Metabolic Support UK can provide practical advice and patient-friendly information to patients and their families from diagnosis and beyond. We can help you to navigate through complex pathways of support and treatment, as well as offering support in times of difficulty.  If you would like to speak to a member of our team, please contact us. We also operate a freephone helpline from Monday to Friday between 10am and 4pm. Please call us on 0800 652 3181.

Metabolic Connect – connecting families worldwide to reduce isolation and enable them to share experiences.

Conferences, Workshops and Webinars – for patients, families, health and industry professionals, to inform them on key issues such as patient engagement, aaccessing treatments, transition.

Young People – we have developed a bespoke programme for teenagers and young adults called NextGen. For more information, see here.

Awareness and Advocacy

Advocacy – on behalf of patients to ensure their voice is heard in key processes, such as NICE and UK Newborn Screening. We collate evidence and data to influence key procedures and access to treatment.

Awareness Raising Campaigns – such as Metabolic Disorders Awareness Week and My Metabolic Hero, as well as creative projects and partnerships like The Rare Project.

Fundraising Support – providing inspiration and support to our community fundraisers, who do a wide range of activities from bake sales and coffee mornings to larger events and challenges like the London Marathon.

Information and Research

Information Services – we have accessible summaries about all Inherited Metabolic Disorders, and can provide disease specific information for schools and care givers.  We can also share information on subjects such as travel insurance and transition.

Professional Partnerships – we work with metabolic clinics in the UK and share our strong links with a network of specialists worldwide. We also work with other patient organisations and advisory groups to ensure we hold up-to-date information and signpost to the correct places.

Supporting Research – into the latest research and new therapies (Further information on the research process coming soon).