Our compassionate and experienced team delivers many support services to patients and families to meet their varying needs, including:
Family and Community Services
Family Advice Service – providing free, impartial and confidential advice and information from diagnosis and beyond. We help navigate patients through complex pathways of support and treatment, as well as offering practical advice and a listening ear in times of difficulty. If you would like to speak to our Core Services 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 Education Days – for patients, families and health professionals, to inform them on key issues such as newborn screening, accessing treatments and 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.
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 have a professional outreach team, who attend metabolic clinics 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).