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NCATS Rare Diseases Are Not Rare! Challenge

Posted October 21, 2018
Diversity - artistic concept. Image credit: geralt via Pixabay, CC0 Public Domain

Diversity – artistic concept. Image credit: geralt via Pixabay, CC0 Public Domain

The National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health (NIH), is seeking innovative ways to communicate with others to educate people about rare diseases through social media or art. The goal of this Challenge, which is being led by NCATS’ Office of Rare Diseases Research, is threefold: First and foremost, it is to raise awareness for all rare diseases in a collective manner. Second, it is intended to bring attention to the many people with rare diseases; and finally, it is to highlight the need for research and the development of new treatments. You can help us get the word out by competing in our rare diseases prize competition!

In addition to cash prizes for 1st, 2nd and 3rd place winners, the 1st place winner(s) will be invited to NIH to present the winning entry at the Rare Disease Day at NIH event (February 2019); all winners and 10 honorable mentions will be posted on the NCATS public website.


Entries must be submitted to by Noon Eastern time on October 28, 2018. 

The Challenge begins: September 30, 2018

Submission Period: September 30, 2018 – October 28, 2018

Judging Period: November 12, 2018 – November 26, 2018

Winners Announced: December 2018


Rare Diseases Are Not Rare! If you know 10 people, chances are you know someone with a rare disease. There are about 7,000 different rare diseases that affect an estimated 30 million Americans. This is more than twice the number of people living with cancer, more than the number of people living with HIV and Alzheimer’s disease combined, and more than the population of Texas.

Some difficulties with rare diseases are that they are hard to recognize, are often hidden conditions, and most currently are not being studied via ongoing medical research. We are asking you to help us bring attention to rare diseases so that they can gain more medical research interest, thereby improving the lives of people with rare diseases. Science, especially genetic medicine, has moved forward to the point now where treatments are possible — such as gene therapies, 3-D printing (devices, tissues and organs) and new drugs. Everyone deserves a chance at an effective medical treatment — whether for a common disease or a rare one — so let’s get the word out!

Here are a few facts to consider:

– Most rare diseases are genetic (around 80%) — they are caused by changes to a person’s DNA (mutations) usually present at birth. We all have DNA, and we all have mutations, whether they cause a disease or not depends on where the mutations are and whether they impact our ability to function.

– Rare diseases also can be due to infections, such as Ebola, or in the U.S., malaria, Chagas’ disease or tuberculosis.

– Many types of cancer, such as leukemia and lymphoma, and brain tumors are rare diseases.

– About half of those diagnosed with rare diseases are children.

– Rare diseases can affect anyone, in any family, anywhere in the world. Sometimes they run in families, but often they occur with no family history.

– Rare diseases can affect many different organs and disease areas, such as rare lung diseases (e.g., cystic fibrosis), movement (muscular dystrophy), the brain (certain types of autism or cerebral palsy), the blood (sickle cell anemia), and many others.

– “Cancer” is actually a collection of hundreds of diseases, even though it is often referred to by just one easily recognizable word.

– Many common diseases are actually collections of several different rare diseases that affect people in a similar way. For example, “breast cancer” is actually a collection of several different cancers, some of which are rare.

You can help by competing in our rare disease prize competition. Here’s what we’re asking you to do:

Find a way to communicate with others and to educate people about rare diseases through social media or art. Use any communication vehicle you choose; be as creative and original as possible. Here are examples of appropriate communication vehicles:

– music video

– song (with or without sheet music)

– dramatic reading

– poem

– painting

– mime

– poster

– comic

– animation

– photo/collage

– new name for “rare diseases” as a whole

– puppets

Each team or individual may submit only one entry.


Basis upon Which Winner Will Be Selected. A panel of federal and non-federal judges, with expertise directly relevant to this Challenge, will evaluate the entries based on criteria listed below and will select the Challenge winners. NCATS will provide feedback from the judges to the winners and non-winners.

The percentages assigned to each set of evaluation criteria are guidelines from NCATS to suggest which features are of emphasis and interest to the Center.

Only complete submissions will be reviewed.


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