Your Rare Disease Journey Matters — Share It in 30 Minutes with Rare Diseases Ireland

Rare Diseases Ireland is testing a new questionnaire designed specifically to capture the healthcare experiences of people living with rare diseases and their caregivers. The questionnaire was built specifically for rare diseases - covering the things standard questionnaires always miss, like how long it took to get a diagnosis, or what it's like coordinating care across multiple specialists. It's completely anonymous and takes around 30 minutes to complete. For the questionnaire to be as useful as possible, they need responses from people living with a wide range of rare diseases and their care givers too. Click on the link to take part and pass it on to anyone else who might be interested. Link:
https://healthandagriscience.fra1.qualtrics.com/jfe/form/SV_9U0V5FKn7Lbu2XA