Skip to content
Need to talk?
Get in touch on 0845 241 2173
Search for:
HOME
Privacy
Complaints Policy
WHO WE ARE
Our Story
What We Do
LATEST NEWS
2019 ANNUAL CONFERENCE
Asfotase alfa (Strensiq) Managed Access Agreement for treating Hypophosphatasia
DISORDERS
A-Z of Inherited Metabolic Disorders
What is an Inherited Metabolic Disorder?
Glossary
Metabolic Centres
Newborn Screening
Participate in Research Studies
RESEARCH STUDY: DISEASE PROGRESSION AND QUALITY OF LIFE OF ADULTS LIVING WITH XLH
The MaP Study: Mapping the Patient Journey in MMA and PA
Research Study for Existing Newborn Screening Conditions
HOW WE CAN HELP
Metabolic Connect
Travelling Abroad
Benefits
Patient Organisations and Online Support
Professionals
Working in Partnership
Patient Referral Form
Newborn Screening App
Young People
Ages 12-18
Transition
Ages 19-25 – NextGen Delegates
Information for Parents/Carers
YOUR STORIES
ALD: Michael’s Story
CSID: Millie’s Story
Cystinosis: Millie’s Story
GA1: Samantha’s Story
HHH: Alison’s Story
HPP: Melanie’s Story
MCADD: Kate’s Story
Rhiannon’s Story: Going to University with MCADD
MSUD: Cathy’s Story
OTC: Phoebe’s Story
PSP Type 1A: Harriet’s Story
Dalila’s Story: Fighting for a Diagnosis
WAYS TO SUPPORT US
Become a Friend
Volunteer
Meet our Community Ambassadors
Donate
Gift Aid explained
Fundraise
Shop and Donate
Give in Memory
Galaxy Tributes
Find a Fund
Open a Fund
2020 London Marathon
Corporate Support
Campaigns
Rare Disease Day
Metabolic Disorders Awareness Week
Vacancies
Blog
Contact
CHRISTMAS CARDS
Research News
