RareTalks is back and with a special opportunity for you to connect!
We're back for part 2! Cassie + Friends' youth mentors are back with another workshop for students, this time about how to write effective scholarship and bursary applications! Led by youth mentor, Ciara Mahaffy (who secured $85,000+ in scholarships!) and other scholarship recipients, this session will teach you how to: Use storytelling, tone, and structure to craft stronger applications Communicate your personal story with confidence and professionalism Apply proven techniques and insider tips from high-achieving applicants Understand what scholarship committees actually look for Join us for part 2 of this FREE online workshop on January 11 at 1 p.m. PST. Sign up now for the online workshop here! Register here! Ciara Mahaffy is a Cassie + Friends Youth Mentor and a high-achieving student who has secured over $85,000 in scholarships. She was Valedictorian [...]
what is a rare disease?
The official Canadian definition of a ‘RARE’ disease, is a disease that affects fewer than 5 out of 10,000 people.
To give you an idea of how rare some diseases can be, let’s consider a high school in Canada with an average of 1,500 students. Lupus, a relatively rare disease, may affect only one student in the entire school. Other rarer diseases such as Childhood Vasculitis and Periodic Fever Syndromes may affect only one student in four schools.
Rare diseases in rheumatology are surprisingly common – there are approximately 7000 known “rare” rheumatic diseases including: Systemic Lupus Erythematosus (SLE, Lupus), Juvenile Dermatomyositis (JDM), Childhood Vasculitis, TRAPS, DADA2, Periodic Fever Syndromes, PFAPA, SJIA, and CRMO.
What are the the common experiences of having a child with a rare rheumatic disease, or being a patient with one?
- It can be difficult to find credible information about the disease.
- Most children living with them have likely not met anyone else with the same disease.
- Community health care providers have less experience treating the diseases.
- Kids and families may feel alone as they try to navigate their disease journey.
WATCH: Intro to Rare Childhood Rheumatic Diseases
Presented by Dr. Lori Tucker, Division Head, Pediatric Rheumatology, BC Children’s Hospital.
And, get connected to even more support by visiting the organization webpages below
FACT:
Rare Rheumatic Diseases often share many similarities with one another.
Learn more about specific rare disease information in our ClassRheum Learning Hub:
Systemic Lupus Erythematosus (SLE, Lupus)
- More common in girls/women and in people of color
- Symptoms can include rashes, fevers, kidney inflammation, and other organ inflammation
Juvenile Dermatomyositis (JDM)
- Inflammation of skin and muscle
- Children can have generalized weakness ranging from mild to severe
- Inflammation of the blood vessels but often involves other organs like the kidneys and skin
- There are many types of vasculitis
- Classified by having recurrent episodes of unprovoked inflammation, usually with fever
Chronic Recurrent Multifocal Osteomyelitis (CRMO):
- CRMO is an ultra-rare rheumatic disease causing inflammation in a child’s/teen’s bones.
Autoimmune vs. AutoInflammatory Diseases:
- Coined less than 20 years ago, the word autoinflammatory is often confused with autoimmune—so, what’s the difference?
Genetics and Childhood Rheumatic Diseases:
- Identifying genetic factors associated with rheumatic diseases can help doctors better understand these conditions and develop more effective treatments.
