What We Do

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

Individual 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.

Information Services – we can provide patient friendly disorder specific information for patients, families, schools and other caregivers.  We can also signpost to relevant partner organisations for some areas of support, and share information on subjects such as travel insurance and transition.

Building Communities

We help connect patients and families living with Inherited Metabolic Disorders with one another to support each other and to share their experiences.

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

Communities – we build online disorder-specific communities where no disorder-specific patient organisation exists, to help connect patients. Where a disorder-specific organisation already exists, we also actively signpost to those organisations.

Empowerment

We help to empower patients by giving them the tools to make informed decisions affecting their care and to advocate for their disorder-specific community.

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

Ambassador Scheme – we run an ambassador programme for young people and disorder-specific communities, to advise us on the issues affecting them and to help us create useful resources for their communities.

Awareness Campaigns – we share campaigns, such as Metabolic Disorders Awareness Week as well as creative projects and partnerships like The Rare Project, with the community to give them opportunities to share their story and to raise awareness of their condition.

Advocacy

We help share the patient voice and ensure that 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.

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.