Through a well trained and experienced team we deliver:
Family and Community Services
Family Advice Service – providing free, impartial and confidential advice and information from diagnosis and beyond, navigating patients through complex pathways of support and treatment, as well as practical advice and a listening ear in times of difficulty. If you would like to speak to our Family Services team please contact us. We also operate a freephone helpline Monday to Friday, 10am – 4pm. Please call us on 0800 652 3181.
Family Contacts Network – connecting families worldwide to reduce isolation and enable them to share experiences.
Conferences, Workshops and Education Days – to patients, families and health professionals, informing on key issues such as newborn screening and adult transition.
Young People – we are developing a bespoke programme for teenagers and young adults. More information 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.
Fundraising Support – providing inspiration and support for our community fundraisers, holding a wide range of activities from bake sales and coffee mornings to larger events and challenges such as the London Marathon.
Information and Research
Information Services – we hold accessible summaries for all Inherited Metabolic Disorders, and can provide disease specific information for schools and care givers. We can also provide information on subjects such as travel insurance and transition.
Professional Partnerships – we have a professional outreach team attending 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).