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Support Our Work | Hurler Syndrome (MPS I-H)
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Support our work in Hurler syndrome (MPS I-H)

Hurler syndrome, also known as severe MPS I (MPS I-H), is exceptionally rare, yet its effect on children and families can be life changing. By backing our mission, you help expand knowledge, improve data collection, strengthen research links and provide families with clearer guidance through diagnosis, treatment and lifelong care.

Every gift of time, expertise or funding helps us deliver reliable information, reinforce registries and advocate for improved services and future therapeutic progress.

This page welcomes families, friends, professionals, organisations and anyone who wants to contribute to progress in Hurler syndrome.

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Why your support is so important

Rare diseases such as Hurler syndrome face unique challenges. Smaller patient populations, limited specialist centres and lower public awareness make research, long-term tracking and tailored family resources more difficult. Your involvement helps bridge these gaps.

  • Better information for families
    Trusted, accessible guidance for parents, carers and young people at every stage of their journey.
  • Stronger data and registries
    Supporting projects that improve long-term monitoring and real-world evidence in MPS I-H.
  • Research and innovation
    Highlighting unmet needs and encouraging collaborative research focused specifically on Hurler syndrome.
  • Advocacy and awareness
    Amplifying the voice of families within health systems and policy discussions around diagnosis, access and long-term support.

What your support helps us do

We use contributions carefully and transparently, keeping Hurler syndrome as our sole focus.

  • Information and education
    Creating and updating practical guides on diagnosis, treatments and daily life, including resources for schools and local healthcare teams.
  • Data and registries
    Supporting collaborations that improve follow-up data and helping families understand registry findings.
  • Research priorities
    Sharing clear summaries of new studies and promoting priority research questions.
  • Advocacy and awareness
    Providing evidence for campaigns around newborn screening, care access and long-term services.

We do not provide clinical care or make individual treatment decisions. Our role is focused on information, data, research collaboration and advocacy.

Ways you can give

Financial contributions of any amount help sustain and expand initiatives dedicated solely to Hurler syndrome.

One-off donations

A single contribution directed toward immediate priority activities.

Find out more

Monthly support

Regular giving provides stable income that allows long-term planning and continuity.

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Major gifts & corporate giving

Larger or corporate contributions can support specific projects, meetings or data initiatives.

Find out more

Fundraise in your community

Community events raise both awareness and meaningful support.

  • Sponsored walks, runs or cycling challenges
  • School and university initiatives such as themed days or bake sales
  • Online birthday or celebration fundraising pages
  • Workplace challenges or charity partnerships

We can provide suggested wording and background information for event pages or talks.

Fundraising ideas and guidance

Need materials?

Access guidance, messaging support and helpful materials for your fundraising activity.

Partnership opportunities

We welcome ethical, patient-centred partnerships aligned with our focus on MPS I-H.

  • Foundations and rare disease charities
  • Academic and clinical centres
  • Corporate partners committed to transparency

Our principles:

  • Families and patients remain central to every decision.
  • Partnership information is shared openly.
  • We actively avoid conflicts of interest.
Contact us about partnership

Give your time or skills

Financial donations are not the only way to help. Skills, time and experience are equally valuable.

Family and peer support

Share lived experience or participate in moderated support groups when ready.

Professional expertise

Offer skills in translation, design, communications, IT or education.

Advisory roles

Clinicians and researchers contributing to content review or educational initiatives.

Transparency and accountability

Trust is fundamental. We treat every contribution with responsibility and care.

  • Our work is dedicated exclusively to Hurler syndrome (MPS I-H).
  • We aim to publish clear summaries of activities and priorities.
  • We maintain openness around partnerships and sponsorships.

How to support our work today

  1. Decide how you would like to contribute.
  2. Visit the relevant donation, fundraising or partnership page.
  3. Reach out if you would like guidance or clarification.
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Support our work at a glance

  • Hurler syndrome is rare, so every contribution makes a measurable difference.
  • Your help strengthens information, data, registries and research visibility.
  • You can support through donations, fundraising, partnerships or volunteering.
  • We operate in a transparent, ethical and patient-focused way.

Donate

One-off or regular giving options.

Fundraise

Ideas, toolkits and guidance.

Partner with us

Foundations and corporate collaborations.

Get involved

Practical advocacy and data roles.

Support organisations

Connect with rare disease charities.

Living with Hurler syndrome

Daily life and practical guidance.

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