Support organisations for Hurler syndrome
Around the world there are patient organisations, MPS societies and rare disease networks that understand Hurler syndrome (severe MPS I, MPS I-H). They provide information, peer support, advocacy and, in some cases, financial or practical help. Finding the right organisation in your country can make a huge difference to everyday life and long-term care.
This page highlights the main types of organisations that support people affected by Hurler syndrome and explains how to use the directory of groups listed below.
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
Example: National MPS Society (UK)
Condition-specific support for MPS I, including family support, events, information resources and advocacy.
Example: Lysosomal / metabolic network (Europe)
A broader metabolic and lysosomal network supporting multiple conditions and linking families to specialist expertise.
Example: Rare disease alliance (North America)
Umbrella support on access, rights and policy, with signposting to condition-specific groups and toolkits for families.
Example: International MPS federation
International signposting, educational resources and research support across MPS conditions, including MPS I.
Example: Carer support charity
Support for carers including wellbeing, respite information and guidance on work and benefits.
Example: Children’s hospice / palliative care organisation
Additional support for symptom control, respite and family care when health needs become more complex.
Finding organisations relevant to you
This directory can be filtered in three ways:
- By focus: Hurler/MPS-specific, LSD/metabolic, rare disease alliances, carer/disability charities, and palliative/hospice organisations
- By region: UK and Ireland, Europe, North America, Latin America, Middle East and North Africa, Asia-Pacific, and global organisations
- By audience: families and carers, adults living with Hurler syndrome, and healthcare professionals/researchers
Understanding the types of organisations
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 organisations for emotional support, respite information and advice on work and benefits
- Disability charities and advocacy groups for inclusion, access and legal rights in education, employment and housing
- Palliative care and hospice organisations for symptom support, respite and end-of-life care when needed
Planning and long-term support needs may change over time. Planning ahead
Making the most of what’s available
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.