Breaking Through Research and Communication Barriers with Translational Care

In 2007, we developed a new model for linking basic science and clinical practice, to increase the efficiency of results based rare disease research – we call it Translational Care. Our collaborative model drives patient-based and treatment focused research projects that improve accurate disease characterization and the development of treatment modalities, removing the obstacles through collaboration.

The Rare Disease Foundation became a registered non-profit organization in February of 2008, and the concept of a cross-disease support network for the rare disease community (patients, caregivers, practitioners and researchers) was developed. Organized meetings for families impacted by rare disease diagnosis across the country, have complemented research projects to further progress in rare disease research and the development of treatments.

What was most impactful for families navigating the difficult road of rare disease diagnosis was being given a voice, a platform to pursue medical resources, and a community for support both Nationally and globally.

Recognizing the importance and value of the parents’ support group, the Rare Disease Foundation refined a strategic plan to ensure community-responsiveness and sustainability for outreach and support programs. In 2008, the Rare Disease Foundation hosted the Peter Wall Institute for Advanced Studies Theme Development Workshop, to discuss our approach to providing much needed to support the rare disease community in Canada.

Gaining Expert Insight from Pharmaceutical and Healthcare Leaders

We began by consulting with ethics experts and sociologists, life science researchers, medical clinicians, families living with rare diseases in Canada, social organizers and anthropologists for guidance. The next step was to meet with representatives from biotechnology firms, the U.S. Food and Drug Administration, and the European Medicines Agency’s Orphan Drug Offices to solicit feedback on industry perceptions, barriers to funding for rare diseases and to understand the scope of pharmaceutical research and industry practices.

The Rare Disease Foundation partnered with the Michael Smith Genome Sciences Center, Child & Family Research Institute, BC Children’s Hospital Foundation, Partners in Care and other patient and rare disease research focused organizations.

The Rare Disease Foundation held its first microgrant competition in December, 2008. The program is administered with the support and our partnership with the British Columbia Children’s Hospital Foundation, and grew to become national in scope. The program is run two times per year; our mission is to be able to review microgrant applications on a concurrent monthly basis, to avoid delays in rare disease research innovations.

The Rare Disease Foundation became an official registered Canadian charity in 2009. Our programs saw significant expansion in 2014 and growth with our Parent2Parent Resource Networks and Microgrant program (Canada and United States). David Cox became our inaugural Executive Director (and first staff member) in 2015; the same year we proudly began funding rare disease research projects in Europe and Africa.

In 2017 we launched a Microgrant Program, and have continued to break through barriers to rare disease research and collaboration, while providing community-based support for families and patients.

With Gratitude to Our Volunteers and Partners

Thank you to the individuals and partner organizations who have assisted us and continue to work with us to improve research, treatment and support services for patients with rare diseases. We are grateful for the compassion and hard work that have enabled the Rare Disease Foundation to grow and expand our services to be a voice of advocacy and resource for patients and clinical researchers worldwide.

Supporting Associations and Partner Foundations

B.C. Children’s Hospital Research Institute
The Canadian Tay Sachs and Related Disorders Organization
UBC Rec (Lace Up for Kids event)

Patrons and Founding Volunteers
Neal Boerkoel
Tamara Taggart
Judy Hall
Barb McGillivray
Mehdi Kurtagich
Kate Paterson
Coleen Christie
Andrea Holmes
Lori Eisenhaur
Ryan Walton
Sally Douglas
Angela Longstaffe
Ted Longstaffe
Suman Bakshi
Debbie Bertanjoli,
Jen Orth
Ruby Smith
Judy Phan
Rosemarie Rupps,
Kirsten Harkins,
Marion Thomas,
JoAnne O’Connor
Dawn Patel
Christele du Souich
Caitlin Brenchley
Susan Creighton
Jennifer Thompson
Kirsten Bartels
Deb Babcock