After discovering her son had developed an extremely rare medical disorder, Squamish resident Isabel Jordan felt completely alone.
Doctors couldn't identify exactly what the problem was and perhaps most troubling was that there was no one with whom to share or connect. No groups, no families around going through the same things her family was dealing with and no chance for moral support.
“It was like we were in a rowboat in the middle of the ocean and didn't know where to turn to,” she said. “It was pretty devastating and really hard for us as a family.”
It was during those trying times that Jordan formulated the idea of creating the Rare Disease Foundation (RDF).
“I called the medical office we were dealing with to see if there was another family dealing with the same things we were dealing with,” she said. “They got back to me and said there was no one in Vancouver and not even anyone in B.C. If it's a common disease or diagnosis, there are associations you can belong to and meet other parents. There was nothing like that for us.”
Jordan, along with a group of other like minded individuals, sought to provide support for families dealing with rare diseases and formed the RDF in 2008. In 2009 the RDF was incorporated as a society and started up both its support network and a research grant division.
“Our vision is to transform the world of rare disease care. It's a small vision,” she said, laughing. “We want to make more research happen for rare diseases. Many medical service plans won't pay for a diagnosis for people with rare diseases because it's looked at as research. One of the things our group tries to do is help fund those diagnoses.”
According to Jordan, one of the ironic things about rare diseases is they aren't really that rare. The World Health Organization defines rare diseases as a disease occurring in less than one in 2,000 people, but she pointed out that Canada is one of the few Western nations to not have a legal definition of a rare disease.
“Individually they're rare and unique, but if you add them up, about one in 12 people have one,” she said. “That's a lot of people that are being underserviced.”
The group helps fund research into rare diseases and since 2009 has funded more than 140 micro grants in hospitals and universities and disbursed over $450,000. The RDF had also created parent-to-parent resource networks to help families deal with stress in Vancouver, Ottawa, Toronto and Winnipeg.
More recently, Jordan received the Rarity Award of Honour from the Canadian Organization for Rare Disorders (CORD) at the annual Rare Disease Day celebration in Toronto on Feb. 27. The award is given to an individual who demonstrates outstanding volunteerism and citizenship in improving the lives of those living with rare diseases in Canada. Jordan said it was an honour to win the award.
“I was very touched and humbled to win,” she said. “It feels good that we're having a positive impact in the rare disease community.”
Jordan also announced plans to bring a parent to parent resource network to Squamish in April.
“I'm ridiculously excited to get one going here,” she said. “In every community there's going to be that one in 12 and I think it will be great for us to come together and use each other as a resource.”
The Squamish meetings start April 17 at 7 p.m. at the Hotspot in downtown Squamish. The group will webcast live speakers for the first half of the meeting and the second half will be a parent meeting and discussion. The group plans to meet monthly. Those interested can email email@example.com for more information.
Jordan said she wants to continue to build the program up and expand to other parts of Canada and the United States. For more details on the RDF, visit www.rarediseasefoundation.org.