The starting point for the Rare Disease Foundation was a group of several parents and two doctors in Vancouver, Canada who began to envision a means of finding more answers for patients with rare or undiagnosed diseases. It had become increasingly difficult for interested physicians and clinician-scientists to pursue potentially life-changing research because of financial and administrative barriers. This is especially important when it comes to rare diseases because pre-existing treatments are almost never available based on the unique nature of these disorders. For these children, research IS care. In 2007, we developed a new model for linking basic science and clinical practice to increase the efficiency of rare disease research – we call it Translational Care. This collaborative model drives patient-based, treatment-focused research projects from disease characterization to treatment with greater efficiency.
The Rare Disease Foundation became a non-profit organization in February 2008. In March 2008, the concept of a cross-disease support network for the rare disease community was developed. Through organizing meetings attended by families of affected children, we have been able to complement research projects performed in the lab with social support that is inclusive of diversity.
Following the initiation of our parents’ support group, the Rare Disease Foundation sought to refine its strategic plan to ensure sustainability and community-responsiveness, as well as identify prospective partnerships. In July 2008, we hosted a Peter Wall Institute for Advanced Studies Theme Development Workshop to discuss our concept with ethicists, communications experts, life sciences researchers, clinicians, sociologists, families, anthropologists and social organizers. Subsequently, we met with representatives from several biotechnology firms, the US Food and Drug Administration and the European Medicines Agency’s Orphan Drug Offices to solicit feedback. In August 2008, we met with Genome BC to develop overlapping goals and the potential for partnerships. We also initiated partnerships with the Michael Smith Genome Sciences Centre, Child & Family Research Institute, BC Children’s Hospital Foundation, Partners in Care and others.
In December 2008, the Rare Disease Foundation held its first microgrant competition to fund research projects focused on bringing about improved patient care. This program is administered with the help and support of the BC Children’s Hospital Foundation and is now national in scope. It has been met with great enthusiasm by researchers and physician-scientists who finally have a way to put their best ideas about rare diseases to work. The program is run twice a year and we anticipate one day being able to review microgrant applications on an ongoing basis to avoid delays in this critical work. Current and past projects can be found in the Research section of this site (click here).
In February 2009 the Rare Disease Foundation officially became a charity. A number of wonderful people have played very important roles in starting our organization and developing its programs. Past Board members who have given extensively of their time and energy include: Neal Boerkoel, Tamara Taggart, Judy Hall, Barb McGillivray, Mehdi Kurtagich, Kate Paterson, Coleen Christie, Andrea Holmes and Lori Eisenhaur. The energetic and brilliant Ryan Walton was instrumental in our establishment and in starting and managing our initial online social network. Our organization’s early days were supported by and our microgrant program continues to be supported by the hard work of many good people at the BC Children’s Hospital Foundation and the Child and Family Research Institute, now called the BC Children’s Hospital Research Institute. The sheer generosity and wonderful creativity of Sally Douglas and the good people at Kaldor (Jen, Ginger and the gang) have been astonishing. We have much gratitude for Angela and Ted Longstaffe who have been unwavering in their support. The Canadian Tay Sachs and Related Disorders Organization provided generous establishment funding for our family psychosocial support program. Important fundraising partners include UBC Rec with through their Lace Up for Kids event, Suman Bakshi, who managed the Diamond Race, and mCentred. We have received generous grant support from Canucks for Kids and the R. Howard Webster Foundation. Debbie Bertanjoli, Jen Orth, Ruby Smith and Judy Phan have provided us with awesome graphic design support over the years. Rob Sweetman, Scot Keith and the gang at 123w.ca produced our two truly amazing PSA’s. A special thanks goes to Rosemarie Rupps, Kirsten Harkins, Marion Thomas, JoAnne O’Connor, Dawn Patel, Christele du Souich, Caitlin Brenchley, Susan Creighton, Jennifer Thompson, Kirsten Bartels, Deb Babcock and all our wonderfully generous volunteers who have been the force that allowed us to flourish and have a lot of fun along the way!
Our programs saw significant expansion in 2014, with our Parent2Parent Resource Networks and Microgrant program expanding across Canada and into the US. We also hired our very first staff member! David Cox became our inaugural Executive Director, starting in January 2015. Our Microgrant program began funding projects in Europe in 2015 and Africa in 2017. We also launched a Minigrant program in 2017. We look forward to an exciting 2018 and beyond!