Rare Disease Day is recognized every year on the last day of February to raise awareness of rare diseases. While having a rare disease might not feel like a cause for celebration, it is an occasion for recognition!
What is a Rare Disease?
A rare disease is a disease that affects a small percent of the population. In the United States, a rare disease is defined as one that affects less than 1 in 2,000 people at any given time.
Patients with rare diseases report certain common experiences. A 2014 large scale survey of NET patients identifies NET-specific needs and challenges:
Delayed diagnosis (34% report >5 years for proper diagnosis with NET)
Health care providers have limited knowledge of their disease
Barriers to accurate information and education about the disease and access to NET specialists
Limited treatment options
Decreased quality of life
Increased financial costs related to traveling to see specialists and for medical care and treatment
Impacts the emotional health of the patient and their family/friends as well as the relationships with family/friends
Difficulty establishing trust with providers due to above-cited issues
How Rare is NET?
NET affects 6.98 in every 100,000 people.
Midgut and pancreatic (also known as in gastroenteropancreatic) NET make up about 3 in every 100,000 people a year.
“When you hear hoofbeats… During their training, physicians are taught the mantra, “When you hear hoof beats, think horses, not zebras.” This means that symptoms are more likely to be caused by more common diagnoses rather than rare diseases. The zebra has become the mascot of the NET community as a representation of the rare disease status of NET. Each zebra’s unique pattern of stripes also speaks to the uniqueness of each NET patient’s disease and journey.
Why Recognize Rare Disease Day?
RARE DISEASE DAY IS AN OPPORTUNITY TO CELEBRATE PROGRESS.
Celebrate the recent progress in the NET research made possible by NET Research Foundation (NETRF), the leading private funder of neuroendocrine cancer research.
The NET community continues to build on the 2019 ground-breaking FDA approval of Lutetium 177, noted as the ASCO Advance of the Year of 2019. In other words, PRRT, the mode of delivering the treatment, compared to an automobile. Then Lutetium 177 is like the Ford Model T, the first type of car available in the USA. Now, there is work being done to create many other types of cars in different models and styles.
Click here to learn more about PRRT.
Click here to read more about ongoing PRRT research.
RARE DISEASE DAY IS A REMINDER THAT YOU’RE NOT ALONE.
Watch zebra stories on our “Patient and Caregiver Stories” YouTube playlist.
Hear the story of our very own Giovanna Imbesi by clicking here.
Join us for our weekly patient and caregiver support group here.
When you hear hoofbeats, sometimes it’s a zebra…
FOR MORE ABOUT NET:
Check out the LACNETS Newly Diagnosed page.
The blogpost Queen of Soul Aretha Franklin Died of Pancreatic Neuroendocrine Cancer explains why neuroendocrine tumor of the pancreas is not simply a “rare form of pancreatic cancer” and why this distinction matters.
Written by Lisa Yen, NP, NBC-HWC
Director of Programs & Outreach, LACNETS