CORDSA
What is our topic for the rare disease gala this year?
Rare autoimmune disorders.
How many autoimmune diseases have been identified? (Estimate)
~100
When is rare disease day this coming year?
February 28, 2025
How long does it take, on average, to receive a diagnosis for a rare disease?
5 years or more
Which chromosome is affected by 9P Minus Syndrome?
Chromosome 9
When was CORDSA formed as a student group?
2017
Do autoimmune diseases occur more often in females or males?
Females
What is considered a rare disease?
If it affects fewer than 1 in 2000 people in their lifetime.
What percentage of rare diseases have treatments available?
About 5%. The remaining 95% have no treatment since they are not being studied by researchers.
Where does Non-Hodgkin Lymphoma cancer start?
In the lymphocytes
What are our objectives/goals in CORDSA?
Advocating and raising awareness for rare disorders on and off the U of A campus
Generating funding for research; treatment helping those in need; research; health promotion and education
Reaching out and participating within community events linked to the purpose
As of 2019, how many Canadians have been diagnosed with autoimmune disorder?
~ 2 million people
How many rare diseases are there so far?
~7,000
What is the best test to diagnose rare diseases?
Whole-genome sequencing
What is the cause of Turner's Syndrome?
Chromosomal abnormality in the X chromosome (missing or incomplete)
What does the Zebra symbolize?
“Sometimes when you hear hoofbeats, it really is a zebra.” When you hear hoofbeats you normally assume it is a horse, however rare disease patients are the occasional zebras in the bunch.
Asherson’s syndrome is an extremely rare autoimmune disorder affecting ___ ?
Blood/ blood-coagulation
What are some challenges people with rare disease experience? (list at least 2)
• Difficulty in obtaining an accurate diagnosis (this can take years, which can be critical for stopping/decreasing the progression of a disease)
• Few treatment options
• Little or no research being done on the disease
• Difficulty finding physicians or treatment centers with experience for a particular disease
• Paying for treatments that are generally more expensive than those for common diseases
• Reimbursement issues with medical/private insurance (in countries where healthcare isn’t free)
• Difficulty accessing medical, social, or financial services or assistance because those making
the decisions are not familiar with the disease
• Feelings of isolation and of having been abandoned or “orphaned” by our health care system
What is a treatment method for rare diseases?
Diet therapy, surgery, medication, bone marrow transplantation, antibody therapy, enzyme replacement therapy, gene therapy, stem cell therapy, chemotherapy,
What ethnic demographic (group of individuals) is more commonly diagnosed with Stevens-Johnson Syndrome
Han Chinese individuals
What was our name before it was CORDSA?
NORDSA!
Graves' disease is an immune system condition that affects the _____ ?
Thyroid gland
What percentage of rare diseases are genetic? (hint: more than 50%)
72%
What percentage of rare disease treatments that exist in the USA and Europe DO NOT make it to Canada?
~40%
What is a symptom of Systemic Lupus Erythematosus (SLE)?
Joint pain, swelling, extreme fatigue, skin rashes, headaches, hair loss, chest pain, light sensitivity