Support and community

Living with Hurler syndrome (severe MPS I, MPS I H) can feel isolating, especially when most people have never heard of the condition. You do not have to face it alone. Around the world there are families, adults, professionals and organisations who understand MPS I and can offer information, emotional support and practical help.

This page brings together the main types of support and community available for people affected by Hurler syndrome, and offers guidance on how to find the right help in your own country or region.

This page is for general information only. Services and organisations vary by country. Always follow advice from your local health care team and national guidelines.

You are not alone in this

Hurler syndrome affects the whole family. Support and connection can:

Reduce feelings of isolation and fear
Help families and adults make sense of complex information
Provide practical tips from people who have “been there”
Give access to trusted charities and advocacy groups
Strengthen mental health and resilience over the long term

Support can come from many sources, including clinical teams, patient organisations, other families, schools, employers and social care services.

Different kinds of help at different times

Make it clear that families can “mix and match” sources of support depending on their needs and preferences.

Medical and allied health support

metabolic teams, transplant centres, paediatricians, adult physicians, therapists

Patient organisations and charities

MPS societies, rare disease federations, condition specific charities

Peer and family support

in person and online groups, buddy schemes

Psychological and counselling support

for patients, parents, siblings and carers

Practical and social support

social workers, disability services, financial advice, education advocacy

MPS Support Groups - Green Theme

Finding national and international groups

Many countries have MPS societies or rare disease organisations that act as a central hub for advocacy and care.

Helplines and email support from staff who understand rare diseases
Family days, conferences, online webinars and local meet ups
Support applications for benefits and education adaptations
Advocating for access to diagnosis and specialist care

How to search

Follow these steps to find local support in your region.

Ask your metabolic or transplant team which MPS organisation they recommend in your country.

Search for "[your country] MPS society" or "[your country] rare disease alliance" on the web.

Check whether these organisations offer materials in your language.

Peer Support Section

Connecting with people who understand

Talking to someone who has faced similar challenges can be very powerful. Peer support can range from casual local meetups to structured mentoring.

Family Days

Residential weekends and events organised by charities.

Buddy Schemes

One-to-one mentoring pairing newer families with experienced ones.

Benefits

Practical tips about equipment and daily life
Emotional validation from those who "speak the same language"
Opportunities for teenagers and adults with MPS I H to connect

Important Cautions

Not every story will match your own situation
Information shared in groups should not replace medical advice
It is fine to step back from groups if they become overwhelming

Professional help for mental health and coping

Support from mental health professionals can be helpful at many points, for example:

Around diagnosis, HSCT or major surgeries
During long or repeated hospital stays
During school transitions, adolescence and transition to adult care
When there is anxiety, low mood, trauma symptoms or family strain

Sources of psychological support can include:

Psychologists and counsellors attached to metabolic, transplant or paediatric services
Child and adolescent mental health services
Adult mental health services
Community or charity based counselling and family support

On the page you can gently remind families:

Asking for psychological support is a sign of strength, not weakness
Mental health care is a key part of overall treatment for Hurler syndrome

Help with everyday challenges

Families and adults may need help with:

Transport to hospital and accommodation near specialist centres
Disability benefits, carer’s benefits and other welfare support
Equipment and home adaptations
School based support, education plans and college or university adjustments
Work, employment rights and reasonable adjustments

Sources of practical support may include:

Hospital or community social workers
Disability or welfare advice services
Local authority or municipality services
Education advocacy services and disability support offices in schools or universities
Charities that offer grants, small funds or practical help

You can suggest that families:

Ask their specialist team if there is a designated social worker, nurse specialist or key worker who can help coordinate support
Bring a list of practical questions to appointments, not only medical ones

Parents, siblings and extended family

Different family members often need different kinds of support.

Parents and carers:

May benefit from parent groups, one to one counselling, carer support services and respite care where available
Often need advice on balancing work, finances and caring responsibilities

Siblings:

Can be included in family days, sibling groups or dedicated workshops run by charities and hospitals
May benefit from school based support, counselling or age appropriate information about Hurler syndrome

Grandparents and extended family:

Often want reliable information so they can understand and help
May also need emotional support if they are closely involved in care

Encourage families to involve siblings and extended family in appointments or information sessions when this feels appropriate.

Using online support wisely

Online groups and social media can be helpful, but it is important to stay safe:

Choose groups that are moderated and linked to recognised organisations where possible
Be cautious about sharing personal information such as full name, address or hospital details in public spaces
Remember that treatment decisions should always be discussed with your own medical team
If content in a group increases anxiety, guilt or pressure rather than support, it is okay to leave or mute it

Families and adults can ask their clinical team or patient organisation for recommendations of trustworthy online communities.

Growing up and staying connected

Teenagers and adults with Hurler syndrome need support that respects their independence, privacy and life goals.

Possible sources include:

Young adult or adult groups within MPS organisations
Online communities specifically for young people living with rare conditions
University or college disability support services
Employment support, vocational rehabilitation and mentoring programmes
Peer led advocacy and leadership opportunities in the rare disease community

1 Support should be offered with the young person or adult, not just to their family
2 They should be directly involved in choosing which groups or activities feel right

Key points about support and community

Living with Hurler syndrome (overview)

Everyday life, school, family and adulthood

Mental health and emotional wellbeing

Coping with the emotional impact of Hurler

Education and school

Working with nurseries, schools and colleges

Planning ahead

Medical, practical and future planning

Downloadable guides

Printable checklists and information sheets