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 and Webinars – for patients, families, health and industry professionals, to inform them on key issues such as patient engagement, accessing treatments, transition and newborn screening.

Young People – we are building an advisory group of for teenagers and young adults living with IMDs to create useful resources for young people, by young people.  More details coming soon.

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.  View our case study on delivering the patient voice in the NICE Highly Specialised Technology Appraisal for XLH patients here.

Awareness Raising Campaigns – such as Metabolic Disorders Awareness Week 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 online fundraising on Facebook, to bake sales, coffee mornings and larger events and challenges like the London Marathon.

Information and Research

Information Services – we can provide patient friendly disorder specific information for patients, families, schools and other caregivers.  We can also share information on subjects such as travel insurance and transition.

Professional Partnerships – we work with metabolic centres 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.