Disease Info
This organ is affected in up to 90% of sarc patients
Lungs / lungs and lymph nodes
What's the name of the organization that sent a guest speaker here to talk about advocacy today?
NORD - National Organization for Rare Disorders
What's the name of FSR's fundraising group?
Team KISS
Name two of FSR's research priorities.
Defer to Ginger
Where is FSR's Official Team KISS 5K this year?
New Orleans!
Approximately how many Americans live with sarcoidosis?
200,000
What's the easiest and most powerful way to get a legislator on your side?
Share your personal story
What's the easiest way to donate to FSR?
The big red "donate" button on the website.
What's the scan that shows inflammation light up like a Christmas Tree?
PET scan.
How many full-time FSR staff members are there?
7
What would show up in a biopsy that is a hallmark sign of sarcoidosis?
Noncaseating granulomas
What year was the ODA passed?
1983
What is the name of the organization that gets your donation (and passes them on to FSR) when you donate your birthday on Facebook?
Network for Good
Name 2 ways patients can be involved in research
Defer to Kelli for answers
How many ambassadors did the program start with four years ago?
17
What two factors are most commonly researched as the causes of sarcoidosis?
Genetic predisposition and environmental exposure?
What percentage of rare disease do not have any FDA approved treatments?
95%
What's the name of the website platform FSR uses to host our fundraising pages?
Rallybound
Name the two advanced manifestations Dr. Culver mentioned in his presentation on Advanced Sarcoidosis.
Neuro and cardiac
Name the 3 previous locations of the official Team KISS 5K.
Chicago
Nashville
Atlanta
What is the result of prolonged tissue inflammation?
Fibrosis
What does the Orphan Drug Act (ODA) do? (name 1 of the 4 points from the earlier presentation)
- Market exclusivity
-FDA user-fee exempt-on
-Orphan Drug Clinical Trials Grant Program
-Tax credit on clinical testing
Name 2 of the 6 main revenue sources for FSR.
Defer to Ginger for answers
What is the technology used for gene editing?
CRISPeR
Name the duo that founded FSR.
Andrea and Reading Wilson.