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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…
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The Power of Community
Parents don't know where to turn when faced with a diagnosis of a very rare or unique condition. If a relevant disease-based organization exists, it may be national or international in scope and other affected families may live far away. The Rare Disease Foundation can help at a local day-to-day level. Our parents have found that they have much to offere each other, regardless of diagnosis.
-A Rare Disease Foundation Parent
Research Feature
January 11, 2012
Gene find could help those diagnosed with Joubert Syndrome.
Roberta Pak - Research Features
This article not only highlights the great scientific research being done on rare diseases in Canada but also discusses some of the issues facing those suffering with a rare disease.
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Rare Disease Day 2012
Wednesday February 29th
International Rare Disease Day will be here before we know it. How will you let the greater community know what it means to live with a rare disease? Build awareness with the Rare Disease Foundation. Join us on Wednesday February 29th as we and other rare disease organizations around the world plan events that build awareness. We will be celebrating a year of research success and building connections in the rare disease community. Watch this space for more details!
Event Calendar
Resources
Parents don't often know where to turn when faced with a diagnosis of a very rare or unique condition. Join our online community for links to resources (both general and parent edited local wikis) and parent blogs. As parents, we have found that we have so much to offer one another, regardless of diagnosis.
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Transforming the world of rare disease care
The Rare Disease Foundation is committed to growing and developing a community which provides a new approach for rare disease research and care.
We provide funding to inspired clinicians and scientists for their patient-focused projects. These studies directly impact the care and quality of life of a child affected by a rare disease.
Our virtual, as well as our bricks and mortar parent groups are based on the mutual desire to enhance our families' lives through support, mentorship, networking and education.
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