NCATS Rare Diseases are Not Rare! Challenge Prize Details

Summary for NCATS Rare Diseases are Not Rare! Challenge

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.

Evaluation criteria that judges will be asked to address are specified below. 

Dates and Deadlines

Entries must be submitted to Challenge.gov 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 

For Further Information Contact

anne.pariser@nih.gov, M.D., NCATS, NIH, 301-402-4338 or alice.chen2@nih.gov, M.D., NCATS, NIH, 301-827-2015; or send an email to ORDR@nih.gov

The IC's Statutory Authority to Conduct the Challenge 

The general purpose of NCATS is to coordinate and develop resources that leverage basic research in support of translational science and to develop partnerships and work cooperatively to foster synergy in ways that do not create duplication, redundancy or competition with industry activities (42 USC 287(a)). To fulfill its mission, NCATS supports projects that will transform the translational process so that new treatments and cures for diseases can be delivered to patients faster by understanding the translational process and to create a basis for more science-driven, predictive and effective intervention development for the prevention and treatment of all diseases. NCATS supports rare disease patients and their communities by providing translational research funding, tools and other resources that help address their unique Challenges. It is beneficial to all stakeholders for NCATS to optimize the communication tools available to support effective information dissemination and education. NCATS also is conducting this Challenge under the America Creating Opportunities to Meaningfully Promote Excellence in Technology, Education, and Science (COMPETES) Reauthorization Act of 2010, 15 U.S.C. 3719. In line with these authorities, this Challenge will lead to innovative ways to communicate with others and to educate people about rare diseases through social media and/or art. 

Subject of the Challenge Competition

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.

Rules for Participating in the Challenge

Solvers must be 18 years of age or older and may participate singly or as part of one or more teams. Teams are not limited in the number of members. Each team must designate a captain who must be a U.S. citizen or permanent resident who is responsible for all correspondence regarding this Challenge. Teams also may merge, collaborate, subdivide or otherwise organize themselves and their members as needed to prepare a solution for this Challenge.

  1. To be eligible to win a prize under this Challenge, an individual or entity—
    • Shall have registered to participate in the Challenge under the rules promulgated by the NIH as published in this Notice;
    • Shall have complied with all the requirements set forth in this Notice;
    • In the case of a private entity, shall be incorporated in and maintain a primary place of business in the United States, and in the case of an individual, whether participating singly or in a group, shall be a citizen or permanent resident of the United States.   However, non-U.S. citizens and non-permanent residents can participate as a member of a team that otherwise satisfies the eligibility criteria. Non-U.S. citizens and non-permanent residents are not eligible to win a monetary prize (in whole or in part). Their participation as part of a winning team, if applicable, may be recognized when the results are announced.
    • May not be a Federal entity or federal employee acting within the scope of their employment;
    • May not be an employee of HHS (or any component of HHS) acting in their personal capacity;
    • Who is employed by a federal agency or entity other than HHS (or any component of HHS), should consult with an agency Ethics Official to determine whether the federal ethics rules will limit or prohibit the acceptance of a prize under this Challenge;
    • May not be a judge of the Challenge, or any other party involved with the design, production, execution, or distribution of the Challenge or the immediate family of such a party (i.e., spouse, parent, step-parent, child, or step-child). 
  2. Federal grantees may not use Federal funds to develop their Submissions.
  3. Federal contractors may not use Federal funds from a contract to develop their Submissions or to fund efforts in support of their Submission.
  4. Submissions must not infringe upon any copyright or any other rights of any third party.
  5. By participating in this Challenge, each individual (whether competing singly or in a group) and entity agrees to assume any and all risks and waive claims against the Federal government and its related entities (as defined in the COMPETES Act), except in the case of willful misconduct, for any injury, death, damage, or loss of property, revenue, or profits, whether direct, indirect, or consequential, arising from participation in this Challenge, whether the injury, death, damage, or loss arises through negligence or otherwise.
  6. Based on the subject matter of the Challenge, the type of work that it will possibly require, as well as an analysis of the likelihood of any claims for death, bodily injury, property damage, or loss potentially resulting from Challenge participation, no individual (whether competing singly or in a group) or entity participating in the Challenge is required to obtain liability insurance or demonstrate financial responsibility in order to participate in this Challenge.
  7. By participating in this Challenge, each individual (whether competing singly or in a group) and entity agrees to indemnify the Federal government against third party claims for damages arising from or related to Challenge activities.
  8. An individual or entity shall not be deemed ineligible because the individual or entity used Federal facilities or consulted with Federal employees during the Challenge if the facilities and employees are made available to all individuals and entities participating in the Challenge on an equitable basis.
  9. By participating in this Challenge, each individual (whether participating singly or in a group) and each entity grants to the NIH an irrevocable, paid-up, royalty-free nonexclusive worldwide license to reproduce, publish, post, link to, share, and display publicly the Submission on the web or elsewhere. Each participant will retain all other intellectual property rights in their Submissions, as applicable.
  10. NIH reserves the right, in its sole discretion, to (a) cancel, suspend, or modify the Challenge, and/or (b) not award any prizes if no entries are deemed worthy.
  11. Each individual (whether participating singly or in a group) or entity agrees to follow all applicable federal, state, and local laws, regulations, and policies.
  12. By participating in this Challenge, each individual (whether participating singly or in a group) warrants that he or she is the sole author or owner of, or has the right to use, any copyrightable works that the Submission comprises, that the works are wholly original with the Solver (or is an improved version of an existing work that the Solver has sufficient rights to use and improve), and that the Submission does not infringe any copyright or any other rights of any third party of which Solver is aware. To receive an award, Solvers will not be required to transfer their intellectual property rights to NCATS, but Solvers must grant to the federal government a nonexclusive license to practice their solutions and use the materials that describe them. This license must grant to the United States government a nonexclusive, nontransferable, irrevocable, paid-up, royalty-free license to practice or have practiced for or on behalf of the United States throughout the world any invention made by the Solvers that covers the Submission. In addition, the license must grant to the federal government and others acting on its behalf, a fully paid, nonexclusive, irrevocable, worldwide license in any copyrightable works that the Submission comprises, including the right to reproduce, prepare derivative works, distribute copies to the public, and perform publicly and display publicly said copyrightable works. To participate in the Challenge, each Solver must warrant that there are no legal obstacles to providing the above-referenced nonexclusive licenses of Solver’s rights to the federal government.
  13. Each individual (whether participating singly or in a group) and entity participating in this Challenge must comply with all terms and conditions of these rules, and participation in this Challenge constitutes each such participant’s full and unconditional agreement to abide by these rules. Winning is contingent upon fulfilling all requirements herein.
  14. By participating in this Challenge, each individual (whether participating singly or in a group) agrees to allow NCATS to publicly display (e.g., on web sites) solutions.

The Prize

Amount of the Prize; Award Approving Official. The total prize purse is up to $5,000 awarded as follows:  

  • First place: $3000 and travel expenses for up to four people to participate in Rare Disease Day at NIH, February 28, 2019 to present the winning entry
  • Second place: $1500
  • Third place: $500
  • Honorable mentions (10) will be posted on NCATS’ website

The NIH reserves the right to cancel, suspend, and/or modify this Challenge at any time through amendment to this Notice. In addition, the NIH reserves the right to not award any prizes if no entries are deemed worthy. The Award Approving Official will be Christopher P. Austin, M.D., NCATS director.

Payment of the Prize. Prizes awarded under this competition will be paid by electronic funds transfer and may be subject to federal income taxes. HHS/NIH will comply with the Internal Revenue Service withholding and reporting requirements, where applicable.

Evaluation and Winner Selection

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.

Submission Requirements and Instructions

Instructions for submission: Use any format you choose, provided it supports the type of submission – be as creative and original as possible. Appropriate types of submissions (communication vehicles) include, but are not limited to, songs, poems, paintings, dramatic readings, mimes, puppets, posters, comics, animations, photos/collages or names.

Each submission for this Challenge requires a complete “Submission Package.” The Submission Package includes a cover letter and the communication vehicle.

Cover Letter

The cover letter must be written in English and observe the page limit (1 page), page dimensions (8.5 x 11 inches), font size (11 point or greater), and margins (1 inch).

In the Cover Letter:

  1. Describe how your submission provides a solution to the Challenge (i.e., how your entry addresses the problem).
  2. Explain why you selected the type of communication vehicle.
  3. Describe the target audience and suggest means of disseminating the entry.

Communication Vehicle

Follow the instructions at Challenge.gov to submit the material. Care should be given to select and upload the appropriate file types and formats. Videos are limited to 2 minutes duration.

Note: You must not use HHS’s logo or official seal or the logo of NIH or NCATS in the entries and must not claim federal government endorsement.

Additional details can be found at: Detailed submission requirements and instructions.

Challenge Description

Find a way to communicate with others and to educate people about rare diseases through social media or art. For example:

  • Create a music video or animation
  • Write a song (with or without sheet music)
  • Take a photo/create a collage or puppets
  • Create a poem, a poster, a comic, painting or a dramatic reading
  • Come up with a new name for “rare diseases” as a whole

Entries will receive up to 5 points for each criterion, for a total of up to 15 points per entry.

  1. How creative and original is the entry?
  2. To what extent does the entry address rare diseases collectively?
  3. How likely is it that the entry could be an effective communication vehicle? Will it appeal to a broad audience? Is it easy to disseminate?

Judging criteria:

Basis Upon Which Submissions Will Be Evaluated.

Note: You must not use HHS’s logo or official seal or the logo of NIH or NCATS in the entries and must not claim federal government endorsement.