This page explains why awareness matters, the types of events you can get involved in, and how to plan safe, respectful activities that genuinely support people living with Hurler syndrome.
Awareness information on this page is general. Dates, campaigns and regulations vary by country. Always check local guidance and work with recognised organisations when planning events.
Turning rare disease into shared understanding
Hurler syndrome is rare. Many people, including health professionals and teachers, may never have heard of it. Awareness and events can:
- Help families and adults feel seen, understood and supported
- Promote earlier recognition and diagnosis of MPS I
- Highlight the importance of access to specialist care, HSCT, ERT and multidisciplinary follow up
- Encourage schools, workplaces and community groups to make practical adjustments
- Support fundraising for research, patient support and information services
Awareness is not about pity. It is about recognition, respect and informed action.
Different ways to raise awareness
You can be involved in awareness in ways that fit your energy, time and resources. Examples include:
Awareness and education events
- Information stands at hospitals, schools, universities or community venues
- Educational talks or webinars for health professionals, teachers or students
- Participation in rare disease or MPS information days
Fundraising and community events
- Sponsored walks, runs, cycles or challenges
- School non-uniform days or themed days
- Local events such as coffee mornings, bake sales or quiz nights
Online and social media campaigns
- Sharing verified information about Hurler syndrome on social channels
- Joining coordinated campaigns for MPS awareness or rare disease days
- Creating short videos, blogs or posts about personal experiences (when comfortable)
Families and adults can choose the level of involvement that feels right, from quietly sharing a link to organising a larger event.
Many countries recognise:
You can ask your national MPS society or rare disease organisation:
- Which awareness days they observe
- Whether they have posters, logos, hashtags or materials for you to use
- How you can join existing campaigns rather than creating everything from scratch
Choosing activities that fit your situation
Ideas that many families and adults find manageable:
- Share the website link for hurlersyndrome.org with friends, relatives, schools and community groups
- Ask your child's school or your workplace to mark a rare disease or MPS awareness day with a short assembly, newsletter item or display
- Help your MPS society by sharing their posts, attending events or volunteering in small ways
- Organise a modest fundraiser, such as a coffee morning or online donation page, if and when you feel ready
- Offer to speak briefly about your experience in a controlled setting, if you feel comfortable and supported
It is always acceptable to say no. Your health and family needs come first, and awareness can still happen without constant personal exposure.
Running awareness activities in education settings
What schools and colleges can do
- Include a short, age appropriate session on rare diseases or Hurler syndrome in assemblies or tutor time
- Plan a non-uniform or themed day to support a chosen MPS or rare disease charity
- Share information sheets with staff about Hurler syndrome and how it affects learning, mobility, hearing and vision
- Involve the student and family (where appropriate) in deciding what is shared and how
Good practice
- Never single out a child without their consent or present them as a lesson or spectacle
- Focus on respect, inclusion and practical understanding rather than sympathy alone
- Use verified information from trusted sources and keep medical details at a level the student and family are happy with
Awareness beyond the clinic and classroom
Workplaces, faith communities, sports clubs and community groups can:
- Host short talks or lunch time sessions about rare diseases and Hurler syndrome
- Support staff or members who are carers or who live with Hurler syndrome to share information if they wish
- Use newsletters, intranets or notice boards to highlight awareness days
- Organise fundraising events in partnership with recognised charities
Good practice includes:
- Asking the person or family affected what they feel comfortable with
- Respecting privacy and not sharing personal medical details without explicit consent
- Linking awareness to practical changes, such as flexible working, accessibility improvements or inclusive activities
Partnering for accurate and safe messaging
When planning events or campaigns:
- Contact your national MPS society, rare disease alliance or other trusted organisation for materials and guidance
- Ask your metabolic or transplant team for input on medical content, especially if events target health professionals
- Use patient stories in ways that respect consent, privacy and emotional safety
- Avoid promising cures or guaranteed outcomes, and be clear about what current treatments can and cannot achieve
This helps ensure that awareness efforts are both emotionally supportive and scientifically sound
Getting the tone right
When raising awareness:
- Focus on accuracy, dignity and empowerment
- Avoid language that is overly sensational, frightening or pitying
- Do not promote unproven treatments or encourage changes to medical care without consulting specialists
- Be careful when sharing photos and videos, particularly of children, and ensure that everyone with parental responsibility agrees
- If fundraising, be clear where funds will go and how they will be used
You can remind participants that awareness should support, not exploit, people living with Hurler syndrome.
Further detail from the source pages
Further detail6 sections
For families and adults
A simple planning checklist
Purpose
Is the main goal awareness, fundraising, education or a mix?
Partners
Can you link with an MPS organisation, hospital, school or workplace?
Audience
Who is this for, and what do they need to know?
Content
Are you using verified information and respecting privacy?
Capacity
What can you realistically manage with your current energy and time?
You can start small. A short classroom talk or social media post can be as valuable as a large public event.
For healthcare professionals
Clinical roles in awareness work
Signpost
Direct families to trusted awareness campaigns and organisations
Review content
Offer to review medical content for patient led events
Participate
Join hospital or community education sessions about Hurler syndrome and MPS I
Support messaging
Encourage balanced messaging that includes both hope and realistic expectations
Protect wellbeing
Support families who may feel pressure to tell their story repeatedly
Awareness work should complement, not compete with, clinical care.
Key points about events and awareness
- Awareness and events can improve understanding of Hurler syndrome, support families and adults, and strengthen advocacy and fundraising.
- Activities can range from small, local events to national campaigns and online initiatives.
- Working with recognised MPS and rare disease organisations helps ensure accurate, safe messaging.
- Families and adults should only take part in ways that feel emotionally and practically sustainable.
- Schools, workplaces and healthcare teams can play important roles in supporting respectful, informed awareness efforts.
Support and community (overview)
Types of support and how to find it
Support organisations
MPS societies and rare disease charities
Support groups
Peer support and online communities
Further detail — part 22 sections
Practical support
Help with transport, equipment, education and work
Patient and family stories
Real life experiences of Hurler syndrome