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Strategy 2027–2031: Have your say

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We'd like to hear your views on IPWSO's draft strategy for 2027–2031.

The draft sets out five strategic priorities for IPWSO's work over the next five years:

Understand: building the global evidence base
Influence: awareness and advocacy towards equitable access
Support: lifespan care, birth through older adulthood
Connect: stronger member association infrastructure
Sustain: a strong and resilient organisation

Some questions also ask about resources, experience and needs in your country or association. This information will help us plan how we deliver the strategy.

Please read the draft strategy before completing this survey.

The survey should take around 10 minutes to complete. Questions marked (optional) can be skipped.

For national PWS associations, we encourage a single response on behalf of the association where possible. We also welcome responses from individuals, family members, people with PWS, professionals and partner organisations. If you are responding from more than one perspective (for example, on behalf of an association and as a family member or professional), please submit a separate response for each perspective.

Please note: This survey is not the place to raise an individual support request or a local service issue. If you need help for yourself, your family or someone you support, please contact your national PWS association or IPWSO directly.

About you

Name (optional)

Which best describes you?(Required)

A leader or board member of a national PWS association

A staff member or volunteer of a national PWS association

A parent, family member or carer of someone with PWS

An adult with PWS

A clinician, researcher or other professional working in PWS

A representative of a partner organisation (e.g. research body, funder, industry)

Other

Are you responding on behalf of a national PWS association, or in a personal/professional capacity?(Required)

On behalf of a national association

In a personal or professional capacity

Which country or countries are you based in, or responding on behalf of?(Required)

What is the name of your association?(Required)

How would you describe your association's current size and stage of development?(Required)

Newly forming, not yet formally established

Small and volunteer-run

Established, with some paid staff or structured programmes

Large and well-resourced

Other

Priority 1: Understand: building the global evidence base

This priority is about building a clearer, standardised picture of PWS prevalence, diagnosis and access to treatment and care worldwide.

How important is it for IPWSO to build a better global picture of PWS prevalence, diagnosis and treatment access?(Required)

Not important

A little important

Moderately important

Very important

Essential

Which kinds of information would be most valuable for your country or association to share, or to receive from IPWSO? (optional)

Numbers of people diagnosed with PWS

Access to treatments and medication (e.g. growth hormone)

Association and professional contacts

Education and training needs

Other

Please specify

Is there anything your association already records or collects that could contribute to this work? (optional)

Priority 2: Influence: awareness and advocacy towards equitable access

This priority is about building awareness of new treatments, supporting associations' own advocacy for equitable access, and sharing what has worked in other countries. IPWSO cannot itself grant access to treatment, as those decisions sit with governments and industry.

How important is support from IPWSO in building awareness and advocacy for equitable access to new treatments in your country?(Required)

Not important

Slightly important

Moderately important

Very important

Essential

What would be most useful in this area? (optional)

Clear, independent information on treatment safety and evidence

Advocacy materials and templates

Examples of what has worked in other countries

Connections to researchers or clinical trials

Other

Please specify

Do you know of an example of an association or country successfully improving access to a treatment that IPWSO could learn from and share with others? (optional)

Priority 3: Support: lifespan care, birth through older adulthood

This priority covers support across the whole of life, from birth through to older adulthood, including the growing number of ageing parents and carers still supporting adult children with PWS.

How important is it for IPWSO to improve support across the whole lifespan, from birth through older adulthood?(Required)

Not important

Slightly important

Moderately important

Very important

Essential

Where are the biggest current gaps for people with PWS and families in your country? (optional)

Early childhood

School age

Transition to adulthood

Adult life

Older adulthood for people with PWS

Support for ageing parents and carers

Other

Please specify

Does your association have a resource, programme or model (for example, a family guide, camp or support group) that could be shared with other countries? (optional)

Priority 4: Connect: stronger member association infrastructure

This priority is about strengthening the connections between IPWSO's member associations, through mentoring, shared resources and regional coordination.

How important is it for IPWSO to strengthen connections and mentoring between member associations?(Required)

Not important

Slightly important

Moderately important

Very important

Essential

What kind of support would most help your association? (optional)

Mentoring from a more established association

Shared governance templates (e.g. a constitution template)

Shared resource templates (e.g. school guidance materials)

A regional network or hub for coordination

Clearer information on the benefits of IPWSO membership

Other

Please specify

What support could your association offer to a new association in your region? (optional)

Priority 5: Sustain: a strong and resilient organisation

This priority is about IPWSO's own sustainability through diversified funding, strong governance, good systems, and the people and expertise needed to deliver this strategy.

How important is it that IPWSO invests in its own governance, systems, funding and people in order to deliver this strategy?(Required)

Not important

Slightly important

Moderately important

Very important

Essential

Do you have suggestions for how IPWSO could diversify its funding, or otherwise strengthen how it is run? (optional)

Overall feeback

Is there anything important about these five priorities that we haven't asked about? (optional)

May we contact you if we have a follow-up question about your response?(Required)

Yes

Please leave your email address(Required)

We'll only use your email address if we need to contact you about your survey response.

Strategy 2027–2031: Have your say

About you

Priority 1: Understand: building the global evidence base

Priority 2: Influence: awareness and advocacy towards equitable access

Priority 3: Support: lifespan care, birth through older adulthood

Priority 4: Connect: stronger member association infrastructure

Priority 5: Sustain: a strong and resilient organisation

Overall feeback

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Strategy 2027–2031: Have your say

About you

Priority 1: Understand: building the global evidence base

Priority 2: Influence: awareness and advocacy towards equitable access

Priority 3: Support: lifespan care, birth through older adulthood

Priority 4: Connect: stronger member association infrastructure

Priority 5: Sustain: a strong and resilient organisation

Overall feeback

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