Rare Disease Patient Experiences, Interests and Preferences in Pharmacology Education (RKC Pharm Ed)
A research team at SickKids is conducting a study to better understand how families affected by rare diseases—like pulmonary hypertension—learn about medications. The study, titled Rare Disease Patient Experiences, Interests and Preferences in Pharmacology Education (RKC Pharm Ed), is seeking input from youth and caregivers to help shape future educational tools.
If you've ever searched for medication information related to a rare disease, your experience could help identify what's working, what's missing, and how to make pharmacology education clearer and more useful for other families navigating similar challenges.
This study invites youth living with rare diseases and parents or caregivers to share their experiences with learning about medications. The goal? To build better, clearer, and more useful pharmacology education tools that meet the real needs of rare disease families.
Why Your Voice Matters
Understanding and managing pulmonary hypertension (PH)—and other rare diseases—often requires navigating complex medication decisions. But too often, families are left to find this information on their own.
This study aims to:
Explore how families currently learn about medications
Identify gaps and challenges in existing educational tools
Highlight what types of resources are most helpful
Co-create solutions that are accessible, understandable, and family-friendly
Your feedback will help guide physicians, researchers, and educators to communicate more effectively about treatments and clinical trials.
Who Can Participate?
You’re invited to take part if you:
Have searched for information about medication to treat or manage a rare disease AND
Are a youth (12–18 years) living with a rare disease OR a caregiver of a child with a rare disease (no age restriction)
What’s Involved:
A brief optional demographics survey
A 60–90-minute virtual focus group held on weekday evenings or weekends (depending on your availability)
This study has been approved by the SickKids Research Ethics Board (3430) and is funded by RareKids-CAN.