Challenges Facing the Patient Community
- Health care and social support services are designed for patients with common diseases
- Lack of a diagnosis can result in patients and families being denied necessary services in
hospitals, schools and the community - Patients with rare and undiagnosed disorders require coordination of multiple specialists
- Limited research into rare disorders provides limited hope
- Due to the small market size, there are limited drug discovery initiatives by
pharmaceutical companies when therapeutic targets are known - Supportive organizations specific to each rare disease often do not exist, and those that do
exist have geographically widespread membership that cannot provide advice on local
issues
The parent groups initially started by the Rare Disease Foundation back in 2008, found that when
a group of parents sat around the same table, a similar diagnosis was not the binding factor but
rather the shared experiences.
This initial parent group has now become a Parent 2 Parent Resource Network that has expanded
from its initial beginnings in Vancouver to include Resource Networks in St. John’s, Ottawa,
Toronto, Calgary and Victoria.
The groups host roundtable discussions and guest speakers, many of which are webcast to the
online community. The website has a library of past webcasts plus online forums and shared
resources. As our online and offline community grows, locally, nationally and internationally,
patients and families will develop a stronger voice as a community of rare disease advocates.
Parent 2 Parent Resource Network are currently running in:
- Victoria
- Vancouver
- Calgary (In hiatus. Looking for a parent leader)
- Edmonton
- Toronto
- St. John’s
- Whitehorse
We are developing Resource Networks right now in:
- Regina (First Adult Peer to Peer Network starting soon)
- Winnipeg
- Montreal (Looking for parent leader)
- Halifax (Looking for parent leader)
- Cobourg
Are you interested in starting a Peer 2 Peer Resource Network? Contact families@rarediseasefoundation.org for further information. The more Resource Networks we have the greater the network of support available for patients and families.