Patients at the Heart

Patients at the Heart Program

Harmony Biosciences' Patients at the Heart program underscores our commitment to supporting initiatives that help address the unique needs of individuals with rare neurological disorders experiencing excessive daytime sleepiness, as well as individuals living with Fragile X syndrome.

Patients at the Heart awards are presented to nonprofit organizations that are working to support and address the challenges of people affected by these conditions.

Harmony Biosciences is pleased to announce the following open application period for this year’s Patients at the Heart program.

  • February 26 – May 24: Notification sent to awardees by July 2024

TO APPLY FOR FUNDING, CLICK HERE.

  1. Click "Patients at the Heart"
  2. Application materials, including submission and budget form, are available via this portal
  3. If applying from a 501(c) organization, kindly include your 501(c)(3) tax-deductible letter and your organization’s most recent Form 990

Should you have any questions about portal navigation or specific questions about applications, please refer to the following email address:

View More Program Details

During the open application period in 2024, Harmony Biosciences will accept applications that focus on one or more of the following categories:

  • Programs that help individuals with rare neurological disorders experiencing excessive daytime sleepiness, or individuals living with Fragile X syndrome, live fuller, more engaging lives
  • Programs that address the psychosocial challenges faced by individuals with these conditions, or their caregivers
  • Programs that improve overall support for family members of individuals affected by these conditions
  • Creation of educational materials to increase awareness and decrease the time to diagnose these conditions

Funding Application Information

Application submission should include detailed information on:
  • Description and type of organization
  • Program title and summary
  • Key deliverables and program milestones
  • Evaluation plan
  • Communication and results plan
  • Financial information/detailed budget for project

Harmony Biosciences will request a program update one year after award.

Additional details:
  • Applicants must be a 501(c)(3) or similarly credentialed nonprofit organization
  • No minimum funding amount; maximum funding request per application: $50,000

Incomplete proposals will not be considered for review.

Applications will be reviewed by a cross-functional team of Harmony Biosciences employees. Proposals will be evaluated based on a standard set of review criteria, which will include the quality of the application, creativity of the solution, and the organization's infrastructure and past program successes.

Harmony Biosciences cannot fund projects that will provide a benefit to Harmony Biosciences other than the "incidental and tenuous" benefit that Harmony Biosciences receives in the form of goodwilI, name recognition, and publicity.

We will not consider proposals that include any of the following:

  • Programs that reference Harmony Biosciences products or product candidates, or seek to measure the impacts of Harmony Biosciences products
  • Organizations that discriminate on the basis of age, race, sex, religion, sexual orientation, or disability
  • Funding for events or programs that have already occurred
  • Political organizations, campaigns, or direct lobbying activities
  • Religious organizations or groups whose activities are primarily sectarian in purpose
  • Programs or proposals that supplement an organization's income or offset its expense in a manner that benefits, directly or indirectly, a healthcare provider's compensation

Harmony reserves the right to withdraw this program prior to selecting and making award decisions.
Harmony reserves the right to use awardee organizations and winning programs in media materials.
Harmony reserves the right to partially fund program requests.
Applications and support materials must be submitted in English.

Frequently Asked Questions

Can I submit more than one application?

Yes. Each program application must be submitted separately.

Can my organization apply for funding in collaboration with another organization?

Yes. Collaborative proposals between individuals and/or advocacy/community groups and/or academic institutions and/or medical societies are allowed.

Are local and regional programs being considered?

Yes. Local, regional, and national programs will be considered. At this time, the Patients at the Heart funding will be awarded to programs in the U.S. only.

Is there any guarantee of continuation of funding after awarded?

No. There is no guarantee an awarded program will receive funding in the future, even upon the continuation of a proposed program and beyond the proposal description.

May I submit a request for an activity that has already occurred?

No, Patients at the Heart does not fund activities that have already occurred but will consider support for ongoing and existing programs.

What is the maximum budget that can be allocated for incidental costs?

Administrative or Indirect Costs must be limited to 20% of Harmony Funding Request.

Can budget provided by Harmony be used for travel costs?

Funding support cannot be used for costs of travel, lodging, or personal expenses.

I have a detailed question about my proposal. Who do I contact with a question?

Please address all questions regarding your application to patientsattheheart@harmonybiosciences.com.

2023 Program Awards

Over the past five years, Patients at the Heart has supported 24 initiatives, including:

Kleine-Levin Syndrome Foundation
Awareness & Patient Support Progression

This initiative builds educational and support resources for people with Kleine-Levin syndrome (KLS) and the broader scientific community by creating a new ambassador program that connects patients, caregivers, educators, and professionals to enhance care.

Prader‐Willi Syndrome Association | USA
PWS Sleep Within Reach Resources

This program educates healthcare professionals, caregivers of people with Prader-Willi syndrome (PWS), as well as residential and educational staff on the most misunderstood forms of sleep disorders, including those among people with PWS.

Project Sleep
Social Support Survey Publication & Dissemination

In April 2021, Project Sleep conducted a global survey on the social experiences of individuals with narcolepsy and idiopathic hypersomnia (IH). With over 1,200 responses, this project will enable them to analyze and publish academic findings about psycho-social issues. Survey results have the potential to shape future social support programs and improve health outcomes for those with narcolepsy and IH.

Sleep Consortium
Empowering Next Generation Advocates: Virtual Conference and Intro to EL-PFDD Initiative

This initiative entails preparing a letter of intent for FDA submission to host an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting for IH. They will organize a webinar for people with central disorders of hypersomnolence and their families, featuring expert sessions on diagnosis, management, advocating amid a changing research landscape, supporting future research, and concluding with progress made on the EL-PFDD.

Society for Women’s Health Research (SWHR)
The Impact of Narcolepsy on Women’s Health Across the Lifespan: Women as Caregivers

This program aims to combat stigma and delayed diagnosis of narcolepsy in children. SWHR will provide educational resources empowering mothers advocating for their children within K-12 school systems by addressing stigma and securing necessary support.

Click to learn more about what programs Patients at the Heart supported in 2019, 202020212022, and 2023.

“Combining empathy with innovation to improve the lives of people living with rare neurological diseases is a mission that drives everyone at Harmony Biosciences. We are pleased to support a diverse group of organizations that have each developed new and innovative patient-centric initiatives to help address the unique needs of people living with rare neurological diseases.”

Cate McCanless, Chief Corporate Affairs Officer, Harmony Biosciences

All awards are paid directly to the requesting organization, and never to an individual. No funding is offered or provided in exchange for endorsing or prescribing Harmony products or for a commitment to continue prescribing Harmony products. In other words, any quid pro quo is strictly prohibited.

Any funding provided by Harmony will be in compliance with all applicable laws, rules, and regulations.