A First-of-its-Kind
Survey Where You
Own The Narrative
Our ultimate goal is to gather robust, actionable data and evidence to support advocacy efforts, inform policy decisions, and significantly improve the lives of people living by vitiligo globally.
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What is VPV Survey?
The Vitiligo Patient Views (VPV) survey is a landmark global initiative led by the Vitiligo International Patient Organisations Committee (VIPOC). It is the first survey of its kind to be designed, distributed, and driven entirely by patient organisations.
The survey aims to capture comprehensive data on the lived experience of people affected by vitiligo, including physical, emotional, social, and economic impacts. It covers both patients living with vitiligo and caregivers who support them.
The VPV survey has received a favourable opinion from the Comité de Protection des Personnes (CCP IDF 7 France), supporting recognised participant protection and ethical standards.
Results will be compiled into a global whitepaper and used to create evidence-based advocacy materials that can influence healthcare policy and improve access to care worldwide.
Key Facts at a Glance
- Available in 16 languages across 30+ countries
- Takes approximately 20 – 30 minutes to complete
- Fully anonymous and no personal data collected
- Led by 45+ patient organisations worldwide
- Results published as a global whitepaper
- Open to vitiligo patients and caregivers, subject to age eligibility and appropriate consent requirements.
Why This Survey Matters
Understanding the true impact of vitiligo is the first step toward meaningful change.
Survey Now Available
The survey is available in 16 languages to ensure a truly global perspective.
Why the VPV survey?
VIPOC, bringing together 45+ patient organisations across 30+ countries, is leading this first-of-its-kind global survey to generate real-world evidence that can strengthen advocacy, inform policy, and improve standards of care for people living with vitiligo worldwide.
Shape the Future
Survey insights will drive a global whitepaper and call-to-action, influencing healthcare policies and awareness worldwide.
First-of-its-kind Global Survey
A patient organisation-led initiative to understand the experience of living with or caring for someone with vitiligo across the world.
Your Voice Matters
Help generate evidence to support advocacy and policy change for vitiligo at the global level. Every response contributes to meaningful change.
For Patients & Caregivers
Whether you are living with vitiligo or care for someone who does, your unique perspective is essential to his ground breaking research.
Why This Survey Matters
The wide-ranging impact of vitiligo on people living with the disease across the life course , and their families and caregivers, is rarely included in published literature, and in many cases the patient voice remains unheard.
Patient Experience (children and adults)
Family & Caregiver Experience
Changing Impact Over Time
Emotional Impact of the Disease
Social & Professional Discrimination
Impact on Daily Life, School and Work
Financial Burden
Understanding of Treatment Options
Community Impact on Cultural Groups
Without this data , the true impact of the vitiligo and exprience of people living with the disease will remain unknown ,and the disease will continue to be deprioritized on policy agendas globally
What comes next ?
How your participation will lead to real-world change.
Scientific Impact
Journal Publications
Turning lived experience into research that informs the global medical community.
Strategic Adovacy
Global White Paper
An evidence-based roadmap for better Vitiligo care and policy change.
Regional Power
Localized Reporting
Providing VIPOC Vice Presidents with regional data to drive local health impact.
Local Support
Tailored Resources.
Supplying support groups with data-driven,community-specific slides.
Privacy & Data Protection
Fully Anonymous
No names, emails, or personally identifiable information is collected. Your responses cannot be traced back to you.
GDPR Compliant
The survey follows strict European data protection standards, ensuring your information is handled responsibly.
Aggregated Results
All data is analysed at a group level. Individual responses are never shared or published separately.
Transparent Use
Survey findings will be published in an open-access global white paper, ensuring transparency and accountability in reporting.
Our Partners
This study was implemented with the support of the following partners
