Family & Patient Support

The Parent 2 Parent Resource Network

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:

We are developing Resource Networks right now in:

  • Whitehorse
  • Regina
  • Winnipeg
  • Montreal
  • Halifax
  • Cobourg
Please email us for more information on the developing groups.

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

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Are you interested in starting a Peer 2 Peer Resource Network? Contact for further information.  The more Resource Networks we have the greater the network of support available for patients and families.

Family Counselling Assistance Program

The Family Counselling and Assistance Program is designed to fund counselling on a short-term basis for 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.

Special Events

Family Picnics

Family 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!

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