ThinkGenetic is honored to partner with many incredible organizations, each with their own stories, struggles and triumphs. This month, we are taking a moment to highlight the incredible work of one of our Advocacy Partners, the Rare Disease Foundation (RDF).
The Rare Disease Foundation (RDF) started humbly as a group of several parents and two doctors in Vancouver, Canada trying to find a means of getting more answers for patients with rare or undiagnosed diseases. Currently the organization is funding rare disease research in seven countries, including the United States and Canada. Their innovative Microgrant program has funded close to 500 such awards for $1.5M since 2009!
“It really is astounding the amount of dedication and work the Rare Disease Foundation has provided the rare and genetic disease community,” explains, Len Barker, CEO of ThinkGenetic. “Not only do we have the ability to learn from one another but through our joint vision we can really affect change.”
With a vision of revolutionizing rare disease care through a mission of “creating communities of patients, caregivers, health care providers, researchers & supporters, that work together to transform the lives of those living with rare disease” you can see why our two organizations have joined forces in advocacy.
“We are both excited and appreciative to be part of the ThinkGenetic Advocacy Partner Program” says David Cox, Executive Director of the Rare Disease Foundation. “We are an organization that does not favor one disease indication over any other, but rather we take a big tent approach and support all subgroups and categories of those impacted by rare disease. We know that roughly 80% of rare diseases are genetically based. And we believe in the same things that ThinkGenetic stands for – empowering patients by giving them tools and education that allow those patients to ask more informed questions and improve their care. Quicker diagnosis is key to almost everyone that experiences rare disease. So we’re happy to be partnered with such a like-minded organization, and by extension to their broader base of disease-specific Advocacy Partners.”
The Rare Disease Foundation supportsPeer2Peerand Parent2Parent Resource Networks in 10 Canadian cities from coast to coast as well as online via webcasting. They are always looking for energized volunteers to help coordinate similar groups in cities in the United States and Canada. These Resource Networks are a place for people to share experiences, solutions and resources that impact anyone living with or caring for someone with a rare disease. Social networking events are also organized by the Resource Networks and recognition events are held each year around International Rare Disease Day.
In addition, RDF is the beneficiary of a record-breaking foot crossing of Canada from Victoria, BC to St. John’s, NL by Dave Proctor. Dave is father to a rare child named Sam and is attempting to break the current 72-day record in honor of his son, Sam, while raising $1M for the Rare Disease Foundation. You can follow his progress at @daveoutrunsrare or http://outrunrare.com
Please join us in thanking the Rare Disease Foundation for their hard work and dedication to the community!
Photos Courtesy of Rare Disease Foundation
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. Learn more at https://rarediseasefoundation.org/.
ThinkGenetic enters into Advocacy Partner agreements with organizations, support groups and charities to share information, increase public awareness of genetic conditions and provide trustworthy resources to those living with or caring for someone with a genetic disorder. Learn more and view current partners at news.thinkgenetic.com/advocacy-partner-program or email firstname.lastname@example.org for information about enrollment in the program.