Metabolic Support UK works with Healthcare Professionals, the NHS, NICE, other patient organisations and other bodies to ensure that patients have appropriate support, care, services and treatments to manage their Inherited Metabolic Disorder. We advocate for patients to ensure their voices and experiences are heard in decision making processes to gain access to new treatments and therapies.
If you are a Healthcare Professional, we can support the care that you provide to your metabolic patients and families by:
- Offering emotional support and practical advice to patients and families via our freephone family support line: 0800 652 3181 (Monday to Friday between 10am and 4pm) and email enquiry line: firstname.lastname@example.org
- Providing patient-friendly disorder information on all Inherited Metabolic Disorders. We also have an app, which is for families that receive a positive diagnosis via Newborn Screening;
- Connecting families with each other to reduce isolation;
- Signposting patients to appropriate local services;
- Providing bespoke programmes such as ‘NextGen’ for teens and young adults;
- Opportunities for patients and families to get involved with the metabolic community via awareness raising campaigns and our Community Ambassador programme;
- And much more!
To refer a patient to our services, please click here to complete the referral form.
We also hold conferences and workshops bringing patients and professionals together to inform and educate on the key issues such as newborn screening, access to treatments and transition.