Frequently Asked Questions
What is a rare disease?
Statistically, a rare disease is a diagnosed condition that impacts fewer than 1 in 2,000 people. Rare diseases are chronic conditions that can be degenerative and life-threatening for the patient. Because of the rarity of many of these health conditions, they are often misdiagnosed or not readily recognized by the medical community. As such, patients and their families may face obstacles to receiving the necessary medical support services they need.
How many classified rare diseases are there in the world?
There are more than 8,000 rare diseases. Altogether, rare diseases affect an estimated 1 million Canadian families. Ms. Catherine Parker (Director General, Biologics and Genetic Therapies Directorate, Health Products and Food Branch, Health Canada) defined “rare diseases are life-threatening, debilitating or serious and chronic conditions affecting a small number of patients."
There is no international standard definition of a rare disease, however, we would like to share the recent 2018 report to the House of Commons, “Canadians Affected by Rare Diseases and Disorders: Improving Access to Treatment (Report of the Standing Committee on Health)” as an information resource for Canadian patients and their families.
Why is research for rare diseases limited worldwide?
Prevalence and the smaller patient population (compared to other more common chronic and life-threatening diseases) is the key limiting factor in rare disease research. The objective of medical research is to define diseases, and then create pathways to therapeutic interventions that support enhanced patient care.
The cost of research is a limiting factor. And many innovative research teams are funded by the pharmaceutical industry. However, pharma stakeholders are interested in investments that lead to pharmacological developments; new prescription medications and modalities that can be marketed to a larger group of patients.
As a matter of profitability, the larger the patient group the better. Unfortunately, rare diseases do not meet those population requirements or objectives. This is currently true in every country around the world. And if researchers cannot rationalize their research against a large patient population, funds for life-saving research are hard to acquire.
How many research grants has the Rare Disease Foundation endowed?
The Rare Disease Foundation began working to gather resources and provide life-saving research grants to qualified researchers in 2009. To date, we have endowed approximately $2 million dollars in research funds, to help ‘connect the dots’ between researchers who are working on cures and new therapeutic methods that enhance rare disease patient care.
To learn more about the qualifications for a research microgrant please visit our Microgrant Program page and Innovative Therapies Program page for details about the application process and funding eligibility requirements.
Where can I find information about local support groups for my rare disease in Canada?
The Rare Disease Foundation provides in person and virtual support groups across Canada known as Parent 2 Parent Resource Network groups. This service provides a valuable connection point for both parents of children with rare diseases, and adult patients who are looking for advice, information about resources, support groups and more.
Would you like to join our Parent to Parent Resource Network online community? Contact us at families@rarediseasefoundation.org for more information on our in person meetings.
Can I volunteer with the Rare Disease Foundation in Canada?
When you or someone you love has been impacted by a rare disease, or if you have lost a loved one to a rare disease, you want to get involved. Be part of the conversation that works to create awareness and resources to support rare disease research in Canada, and global discoveries that directly impact the quality of life and treatment outcomes for patients.
Be a voice for children and adult patients with rare diseases. Find out how you can get involved on our volunteer page. Your help makes a difference, and many of our volunteers are rare disease patients and parents of children diagnosed with a rare disease. Get connected to our growing national community and consider starting a support group in your local area.
Can I donate to the Rare Disease Foundation?
Your support means everything, as we work together to not only improve awareness for rare diseases in Canada and worldwide but to proactively support life-saving research that directly impacts the lives of rare disease patients.
As a registered Canadian non-profit organization, we are regulated and governed by a Board of Directors that ensures our administrative costs are monitored, and a percentage of funds are allocated to critical research grants that are making a difference.
Please visit our donation page and learn how you can help create hope and medical innovations for patients and families impacted by a rare disease in Canada.
Would you like more information on fundraising events in support of the Rare Disease Foundation in Canada? Contact info@rarediseasefoundation.org.