Vancouver Area Parent 2 Parent Resource Network
This Month's Topic for Discussion: Accessing Community Care
The Rare Disease Foundation is comprised of parents, caregivers and clinicians who are united in their desire to change the world of rare disease care. We work together to see that more research goes into rare disease, and through our Parent to Parent Resource Networks we band together to share resources and navigate the world of rare disease care together.
This Month's Discussion Topic: Accessing Community Care
We can work on building an informed team of specialists at our specialty clinics that can have a deep understanding of our rare disease history and needs. What happens when we need to access community resources? An understanding of rare diseases is more often than not lacking when we leave those specialty areas. Dental clinics, orthodontics, regional hospitals, pharmacies – we need to access care at these and other specialties. How do your experiences in care differ between specialty clinics and local health care practices?
Come to our April parent discussion with your questions and your best time-tested techniques for bridging the gaps in understanding between community and specialty care. We all have unique strategies that can help one another have better and more meaningful experiences. This is an opportunity for both our veteran parents and those newer to the rare disease world to learn from and mentor one another.
Light refreshments will be provided at the meeting.
New parents are always welcome.
Children and Family Research Institute (CFRI)
BC Children's Hospital Campus
950 West 28th Avenue
For further detailed directions: https://bcchr.ca/about-us/contact-us