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Rare Disease Foundation Part of International Movement
The Rare Disease Foundation is part of an interntional rare disease community dedicated to the theme of Solidarity - the need for collaboration and mutual support in the field of rare diseases. Rare Disease Day events are taking place in countries around the world. The focus of 'Rare But Strong Together' echoes that of the Rare Disease Foundation's own mission of researchers, caregivers and families working together to find solutions.
Two major events are happening in Canada for Rare Day. The…
Café Scientifique is where you can have a drink and learn about the latest ideas and issues in science and technology in an informal setting. It’s not a lecture! It’s a place for group discussion and audience involvement is the most important ingredient.
Go to http://cafe-rare.mcgill-cihr-ig.ca/ to join the webcast discussion
Being diagnosed with a rare disease, such as an uncommon genetic disorder or an unusual infectious or autoimmune disease, can be a
lonely and frightening experience. Because of their rarity, these illnesses are often poorly understood, and don't generally inspire big fundraising campaigns in the same way that more common diseases do. As a result, the people affected by rare diseases often feel abandoned.
But that could change. When you consider the cumulative impact of the thousands of rare…
Ian Brown's book, The Boy in the Moon, an account of his life with his son Walker who has Cardiofaciocutaneous Syndrome, was selected as one of the NY Times' 10 Best Books of 2011. Ian has spoken several times to the Rare Disease Foundation Parents 2 Parents group, including a "Fathers Only" evening in October 2011.
NY Times 10 Best Books of 2011
A Father's Journey to Understand His Extraordinary Son.
By Ian Brown. St. Martin's Press, $24.99.
A feature writer at The Globe and Mail in Toronto, Brown combines a reporter's curiosity with a novelist's instinctive feel for the unknowable in this exquisite book, an account - at once tender, pained and unexpectedly funny - of his son, Walker, who was born with a rare genetic mutation that has deprived him of even the most rudimentary…
Tuesday, September 6, 2011
By Benjamin Alldritt, North Shore News
The Rare Disease Foundation is very grateful to the Canucks for Kids Fund for the generous grant received from them.
The Vancouver Sun on July 23rd reports on some good news for those suffering from Paroxysmal nocturnal haemoglobinuria (PNH)
Canadians suffering from a fatal and ultra-rare blood disease are elated the governemtn has decided to pay for the life-saving drug they need. Read more on the Vancouver Sun website.
Tuberous Sclerosis Complex Canada Director and Rare Disease Foundation parent Jennifer Flinn was interviewed by the Ottawa Citizen on May 25th 2011. She spoke about the TSC Ottawa Race weekend as well as the impacts of the disorder and the worry of a parent.
The parents of Miranda Friz, Peter and Karen, didn't notice anything was different about their darling baby girl until she took a tumble at a local water park at the age of two.
CTV BC's Tamara Taggart profiles the Friz-Munro family on April 9th 2011.
A BC family is hoping a risky bone marrow transplant from little Andrew Chaplin could save his older brother Luke.
Watch as CTV BC's Tamara Taggart interviews the Chaplin family in a piece aired on April 7th 2011.
In part one of the CTV BC series on rare diseases, Tamara Taggart profiles a young boy with a rare genetic defect who won't live a long life but could provide a legacy for others.
Watch the moving piece from April 5th 2011 on the CTV BC website.
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Rare Disease Foundation and rare disease in the media.
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- Ian Brown on NY Time…It was a great talk he gave at the father's group. Hopefully we get a chance to hear him speak again.... I walked away with quite a few insightful…
- Ian Brown on NY Time…Looks like a good read!
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