Resources
Useful information for individuals and families affected by DHDDS
Helpful Facebook groups
Cure DHDDS & nUS1 community - This private Facebook group connects family members, patients and medical professionals involved in DHDDS research. The group offers support, strategies and advice to all those affected with DHDDS and NUS1 mutations.
CDG Global Alliance – This Facebook group connects family members, patients and medical professionals involved in CDG subtypes all over the world.
CDG UK - This Facebook group supports patients and families affected by all CDG subtypes in the UK.
Useful Websites
Frontiers in Congenital Disorders of Glycosylation (rarediseasesnetwork.org) - This is a consortium set up to conduct research to support the best integrated clinical care for the congenital disorders of glycosylation (CDG).
LSD Collaborative – UK LSD Patient Collaborative Cure DHDDS is now proud to be a member of the UK LSD Patient Collaborative Group which is comprised of patient organisations representing those affected by Lysosomal Storage Disorders (LSDs)
sandcastletrust.org - whose services include the following:
- Sandcastle Counselling Service: Run in partnership with Rareminds, this service provides free counselling sessions to any individual impacted by a rare genetic condition either themselves or those caring for a loved one. We can also offer couples counselling via this service.
- Sandcastle Memories Family Respite Service: Giving families the opportunity to spend quality time together and create lasting positive memories – we own two wheelchair adapted caravans providing free breaks to our families, one in Brynteg North Wales and one in Skegness.
- Sandcastle Smiles Service: Creative and sensory home-based activities that families can enjoy together to strengthen relationships.
- Sandcastle Connections: Helping to alleviate social isolation through peer support networks within the rare genetic condition community.