This page highlights the main types of organisations that support people affected by Hurler syndrome.
How these organisations can help
Most MPS and rare disease organisations aim to:
- Provide reliable information about Hurler syndrome and related conditions
- Offer peer and family support, online and in person
- Help with practical issues such as education, benefits and access to services
- Advocate for earlier diagnosis, access to treatment and specialist care
- Support or fund research, including registries, natural history studies and clinical trials
- Raise awareness among health professionals, policy makers and the public
Families, adults and clinicians can all benefit from connecting with these groups. Support and community
MPS societies and condition-specific groups
- Support from diagnosis onwards, including around HSCT and ERT
- Condition-specific information about MPS I and Hurler syndrome
- Helplines, family support workers, conferences and youth events
- Advocacy for access to specialist centres and treatments
Lysosomal and metabolic networks
- Cover multiple lysosomal or inherited metabolic conditions
- Joint education events and conferences across LSDs
- Useful where there is no standalone MPS group
- Extra support alongside an MPS society
Rare disease alliances
- Policy and advocacy on newborn screening and access to care
- Guidance on rights, entitlements and navigating systems
- Toolkits for education, work, benefits and stigma
- Signposting to local and condition-specific groups
Additional layers of support
Alongside condition-specific groups, it is often helpful to connect with:
Carer organisationsfor emotional support, respite information and advice on work and benefits
Disability charities and advocacy groupsfor inclusion, access and legal rights in education, employment and housing
Palliative care and hospice organisationsfor symptom support, respite and end-of-life care when needed
Planning and long-term support needs may change over time. Planning ahead
For families and adults
- Start with one or two key organisations recommended by your specialist team
- Check what each group offers: helpline, information, events, benefits advice, peer groups
- Decide whether you prefer online, phone or in-person support right now
- Remember you can join and step back as your needs change
- Use organisations to help shape questions for clinic, not to replace medical advice
For healthcare professionals
- Keep a shortlist of trusted organisations to offer families
- Ask families which groups they already know and how helpful they find them
- Consider inviting organisations to education days where appropriate
- Encourage families to use written resources alongside clinic follow-up
- Be mindful of cultural preferences and different support needs
Things to keep in mind
- Prefer groups that are transparent about who runs them, how they are funded and how information is produced
- Look for balanced, evidence-informed content that acknowledges uncertainty and individual differences
- Be cautious about communities that promote unproven “cures”, advise stopping prescribed treatments without review, or pressure families to share personal data
- It is OK to ask: “Who writes your information? How is it reviewed? How are decisions made?”
Key points about support organisations
- Support organisations, MPS societies and rare disease alliances can provide information, peer connection, advocacy and practical help.
- There are different types of organisations: Hurler/MPS-specific, LSD/metabolic, rare disease umbrella groups, and carer/disability charities.
- These organisations should complement, not replace, specialist medical care.
- Choose groups that are reputable, transparent and evidence-informed.
- Needs change over time, and it is normal to move between different kinds of support.