- Are you aged between 10 – 17 years old? Or are you a parent or carer of somebody in this age-group? We want to understand the experiences of living with late-onset Pompe disease for you.
- The IPA will be hosting a Community Advisory Board (CAB) to explore this topic. If you are interested in sharing your views about your experiences of living with LOPD during your teenage years, or caring for a teenager, please get in touch.
- We are looking for 3-4 people aged 10-17 (parent/guardian consent will be required) and 3-4 parent/guardian caregivers of people in that age-group.
- The Community Advisory board will be held in English language (time and duration to be decided).
- You will be provided with reimbursement for your time consisting of an Amazon Gift Card (amount to be defined based on country of residence).
- The CAB will be held on behalf of a pharmaceutical company who are interested in using this CAB report to inform their work.
- To register your interest, please email fabiodipietro@worldpompe.org by May 13, 2024.
- We look forward to hearing from you and raising awareness of the youth and parent/guardian/caregiver voice within LOPD!
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