Dear Community,

In light of the current COVID-19 pandemic, the Rare Disease Foundation has made the difficult decision to indefinitely postpone these community gatherings, to ensure the safety of our valued community. This decision was taken under the direction of our Chief Medical Officer (please see attached message) and with the full support of our Chief Executive Officer and Board of Directors.

We are incredibly grateful to the support of our donors, sponsors and supporters and we look forward to resuming our community events in the near future.

Thank you for your support.

Sanaz Maleki
CEO

The P2P Resource Networks are free community groups where you can meet other rare disease patients, families and caregivers. There are Parent 2 Parent groups and Peer to Peer groups.

Parent 2 Parent Resource Networks are currently running in:

• Victoria
• Vancouver
• Whitehorse
• Toronto
• Montreal
• Cobourg
• St. John’s

Adult Peer to Peer Resource Network currently running in:

• Regina (First Adult Peer to Peer Resource Network!)
• Yukon

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 the 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 group 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 their 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 across Canada.

The groups host round table 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.

We are developing Resource Networks right now in:

• Winnipeg
• Halifax (Looking for parent leader)

Are you interested in starting a P2P 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.  We provide you with guidelines, personal support, a manual for getting started and more, wherever you are in the world!

For additional resources click here to access our searchable wiki, a database of services and resources created by our members.