PATIENT REPORTED EXPERIENCE MEASURE (PREM)
What truly matters in rare disease care?
– PLEASE HELP US UNDERSTAND –
We’re inviting people living with a rare disease — and those who care for them — to try out a new questionnaire built specifically to capture what healthcare experiences are really like for you.
A new kind of questionnaire
– designed around your experiences –
Healthcare teams use questionnaires to learn what it’s actually like to be a patient. These are called patient reported expereince measures – or PREMs for short. Existing PREMs were not built with people living with rare diseases in mind. They miss the things that matter most to you: long diagnostic journeys, shortage of specialist expertise, navigating complex care across multiple providers, and the emotional toll that comes with living with a condition few people understand.
This new questionnaire was designed specifically for the rare disease community. Your responses will help us to test and refine the questionnaire and ultimately assess and improve the experiences of people in situations like yours.
A new kind of questionnaire
– designed around your experiences –
Healthcare teams use questionnaires to learn what it’s actually like to be a patient. These are called patient reported expereince measures – or PREMs for short. Existing PREMs were not built with people living with rare diseases in mind. They miss the things that matter most to you: long diagnostic journeys, shortage of specialist expertise, navigating complex care across multiple providers, and the emotional toll that comes with living with a condition few people understand.
This new questionnaire was designed specifically for the rare disease community. Your responses will help us to test and refine the questionnaire and ultimately assess and improve the experiences of people in situations like yours.
HOW IT WORKS
1. Click the link
You’ll be taken to the questionnaire in your browser — no account or login needed.
2. Answer at your pace
The questions cover your healthcare experiences. There are no right or wrong answers — only your perspective.
3. Submit when ready
Your responses are anonymous and confidential. They go directly to the research team.
4. Make a difference
Your input shapes how this tool is developed and how rare disease care is understood going forward.
THIS IS FOR YOU IF…
THIS IS FOR YOU IF…
You are living with a rare disease — or you are a caregiver, family member, or close supporter of someone who is. You don’t need any medical or research background. All we ask is that you share your honest experience of healthcare. Every response counts, especially from communities that are often left out of research.
Answer at your pace
The questions cover your healthcare experiences. There are no right or wrong answers — only your perspective.
Campaign Partners
