Diseases
True or False: Most rare diseases have FDA-approved treatments.
False
What is the main goal of Rare Disease Day?
To raise awareness for rare diseases and improve access to treatment and care.
What global awareness event does NORD participate in every year?
Rare Disease Day
What animal is often used as a symbol for rare disease awareness?
Zebra
True or False: Most rare diseases currently have approved treatments.
False
How many rare diseases are there?
10,000+
What day was rare disease day this year?
February 28th
NORD primarily focuses on supporting people with what types of diseases?
Rare diseases
Name one way individuals can participate in rare disease advocacy.
Participating in awareness campaigns
Contacting lawmakers
Fundraising for research
Sharing patient stories
Participating in Rare Disease Day events
What are drugs developed specifically for rare diseases called?
Orphan Drug
What are most rare diseases caused by?
What year did NORD launch rare disease day?
2009
What does NORD stand for?
National Organization for Rare Disorders.
What type of groups often lead advocacy efforts for rare diseases?
Patient advocacy groups and nonprofits
What 1983 U.S. law encouraged companies to develop treatments for rare diseases?
Orphan Drug Act
Which cancers are considered to be rare?
All pediatric cancers.
About how many countries participate in Rare Disease Day activities worldwide?
100+
In what country is NORD primarily based?
United States
What is one key goal advocates push for regarding diagnosis of rare diseases?
Earlier and more accurate diagnosis
Why are clinical trials often difficult for rare diseases?
Because there are very few patients available to participate.
What is a rare disease known to be caused by exposure to an environmental toxin?
Minamata disease
What symbol is often used in Rare Disease Day campaigns to represent diversity and uniqueness?
Zebra
NORD works closely with which U.S. government agency that approves medications?
U.S. Food and Drug Administration
Why is advocacy especially important for rare diseases compared to common diseases?
Because they affect smaller populations, they often receive less funding, research, and awareness.
Approximately what percentage of rare diseases have an FDA-approved treatment?
About 5-10%