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:
- St. John’s
Adult Peer to Peer Resource Network currently running in:
- Regina (First Adult Peer to Peer Resource Network!)
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
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:
- Halifax (Looking for parent leader)
Are you interested in starting a P2P Resource Network? Contact email@example.com 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.
Community gatherings allow for both casual and structured sharing time. Annual picnics have been
providing opportunities for sharing and fun since 2009.
Sibling Appreciation Day
Our first Sibling Appreciation day focused on providing parents and siblings with a comfortable,
fun environment where they could share their emotions. Counselor led workshops promoted the
effective expression of feelings, taught coping mechanisms and worked to enhance self-esteem.
International Rare Disease Day
Each year on Rare Disease Day (Feb 28 or 29th in the case of a leap year – a rare year!) the foundation hosts presentations by Microgrant recipients designed to bring together stakeholders to share in the successes of research studies from the past year. It is an uplifting evening where everyone can share in the vision of transforming the world of rare disease care – one Microgrant at a time!
The Family Counselling and Assistance Program is designed to fund counselling on a short-term basis for patients and families coping with a rare disease. The lack of emotional counselling available to families is universally identified as the single most important element missing that could support the family dynamics so critical to the health of the affected child.
This pilot program will allow a limited number of qualified Canadian families to secure counselling in their community. Funding for this program was secured through a partnership with The Canadian Tay Sachs and Related Disorders Organization as well as private donors.
To apply for this program you need to be a member of our online community as well as join your local RDF P2P chapter. You will find our application form in the members section of the community page. Please contact firstname.lastname@example.org for more information.