EBoard Members
Who is our Social Media Coordinator?
Amir
What percent of rare diseases have no FDA approved drug treatment?
95%
Rare Disease Day is on the rarest day. What day is it on?
Leap Day (Feb 29th)
All pediatric cancers are classified as rare diseases, true or false?
True
Eric Dane, who shared his ALS diagnosis in 2025, acted in which medical drama?
Grey's Anatomy
List off Amir's favorite hobby that he presented.
Rare disease advocacy
What portion of all new drugs approved by the FDA are for the treatment of rare diseases?
1/3
Before the Orphan Drug Act, medical companies often neglected the development of rare disease treatments. Why?
Too few potential customers
What treatment commonly done by plastic surgeons is also used to control involuntary muscle contractions in the rare disease dystonia?
botox
Which rare disease started a huge social media trend in 2014 that raised 115 million dollars?
ALS (amyotrophic lateral sclerosis)
How many schools did Audrey transfer to in one school year?
4
Casgevy, a treatment for sickle cell disease, edits patients’ blood stem cells using __?
CRISPR/Cas9
Christmas disease was named in 1952 after what: a patient, a holiday, or a hospital?
A patient - Stephen Christmas (the first patient diagnosed with Hemophilia B)
According to NORD, 1 out of every __ people have a rare disease/disorder.
10
Which singer shared a Ramsay Hunt syndrome diagnosis in 2022 after experiencing facial paralysis?
Justin Bieber
Which eboard member has played basketball against LeBron James' son?
Aaron
What term describes a medication developed for a rare disease?
orphan drug
What percentage of rare diseases are genetic?
80%
Lewis Carroll, the famous English author and poet, had a rare disease named after one her books. What is it called?
Alice in Wonderland Syndrome
Gaten Matarazzo, who plays Dustin in Stranger Things, has cleidocranial dysplasia. This condition primarily affects the development of which two structures?
Bones and teeth
What was Josh's favorite grub spot near campus?
Lexington Market
Batten disease is an extremely rare disorder. The experimental drug milasen was custom-made to treat how many patients with Batten disease?
One
Hemophilia
When a young boy heard the name of his rare disease, he pronounced it “65 Roses,” which eventually became the nickname of this disease. What disease was he referring to?
Cystic fibrosis
What rare disease does the main character August in the book/movie Wonder have?
Treacher Collins Syndrome