How can nonprofits use innovation to improve the journey for patients with rare diseases, from diagnosis to treatment and holistic care?

Over 400 million people around the world are affected by rare diseases. Approximately half are undiagnosed, and receiving a diagnosis takes an average of five years. Even after diagnosis, treatment can be challenging: 95% of rare diseases lack an FDA-approved medicine in the U.S. The daily burdens of symptom management and treatment can be complicated by various obstacles, including limited access to transportation for appointments, frequent absences from school or work, significant out-of-pocket expenses, and bureaucratic barriers or inadequate reimbursement options. Caregivers, who play a critical role for many patients (especially pediatric patients), are affected by heavy emotional, financial and social burdens. Both patients and their caregivers often experience loneliness, isolation, and stigma. These challenges persist in all countries at various income levels around the world.

Nonprofits and nongovernmental organizations (NGOs) - especially patient advocacy groups - are uniquely poised to help address these unmet needs. Through their direct engagement with patients, caregivers, and other stakeholders, patient advocacy groups foster a sense of community, advocate for their needs, and empower individuals to take agency over their health. Additionally, they serve as drivers of research, treatment advancements, and broader initiatives focused on quality of life.

Innovations driven by NGOs and nonprofits have an important role to play in improving the experience and wellbeing of patients with rare diseases. Patient registries and databases can facilitate collaborative research and accelerate new treatments. Educational tools can help patients and their caretakers better understand their diagnosis and treatments. Biomedical research approached in new and creative ways can make cures and personalized medicine more accessible. All innovations will need an ecosystem to scale, linking researchers, clinicians, and communities in pursuit of better serving patients.

The Amgen Prize (formerly The Horizon Prize) seeks innovative solutions from nonprofit organizations that improve the journey for patients with rare diseases, from diagnosis to treatment and holistic care. The Amgen Prize has a particular interest in solutions that: 

• Improve the rare disease diagnostic journey – reducing the time, cost, resources, and duplicative travel and testing for patients and caregivers.

• Optimize holistic care for people with rare diseases and their caretakers—including physical, mental, social, and other types of support.

• Promote community and connection among patients with rare diseases and their caregivers.

• Support daily care management for patients and/or their caregivers.

$150,000 in prize funding is available for one winning solution team for The Amgen Prize.

Glossary of Key Terms:

• Nonprofit/Non-governmental organizations/NGO:

  • While the term “NGO” is widely used, there are also many other overlapping terms used such as “non-profit,” “voluntary,” and “civil society” organizations.  NGOs are self-governing, private, not-for-profit organizations. Please note that this Prize is open to nonprofit tax-exempt organizations in the U.S., or its equivalent outside of the U.S. as determined by Amgen. Eligibility for this award is subject to Amgen’s sole determination. Please see the Eligibility Criteria here.

• Innovation

  • Includes a wide variety of approaches that lead to new products, processes, or services, or improvements to existing ones. Innovation can come from new technologies, new applications of existing technologies, new organizational models, or something else. Adapting existing work to reach new stakeholders or communities, particularly those who have less access to affordable healthcare, is also innovative.

What types of solutions are eligible for The Amgen Prize: Innovation for Patients with Rare Diseases?

The most important thing is that your solution addresses the focus of The Amgen Prize: using innovation to improve the journey for patients with rare diseases, from diagnosis to treatment and holistic care. We encourage people of all backgrounds to submit their applications.

Applicants must be a nonprofit tax-exempt organization in the U.S., or its equivalent outside of the U.S. as determined by Amgen. Eligibility for this award is subject to Amgen’s sole determination.

While The Amgen Prize is open to any nonprofit organization or NGO in the world to apply, US law prevents MIT Solve from awarding funds to persons ordinarily resident in Iran, Cuba, Syria, North Korea, Crimea area, Russia, and Belarus, or from parties blocked by the US Treasury Department. 

The Amgen Prize encourages applications from nonprofit organizations or NGOs led by people with rare diseases, as well as applications from organizations led by people from other underrepresented groups and identities. All qualified applicants will receive consideration.  Protected characteristics such as race, color, sex, sexual orientation, gender identity, religion, disability, age, genetic information, veteran status, ancestry, national or ethnic origin will not be a factor in determining whether or not a group is eligible for The Amgen Prize or a factor in awarding The Amgen Prize. 

Applicants to previous Solve Challenges, including the 2021, 2022, and 2023 Horizon Prize, are invited to apply for The Amgen Prize. Winning solutions for previous Horizon Prizes are not eligible to participate in The Amgen Prize. 

Solution applications must be written in English. The Challenge considers solutions at various stages of development:

• Prototype: An initial working version of a solution that may be in the process of getting initial feedback or testing with users (i.e. running a pilot). Until the solution transitions from testing to consistent availability, we would still consider it a Prototype. (Often zero users/direct beneficiaries)

• Pilot: The solution has been launched in at least one community, but is still iterating on design or business model. (Often 10+ users/direct beneficiaries)

• Growth: An established solution available in one or more communities with a consistent design and approach, ready for further growth in multiple communities or countries. Nonprofits and NGOs should have an established set of donors and/or revenue streams.

• Scale: A standard solution operating in many communities or multiple countries and is prepared to scale significantly by improving efficiency. 

Please note that we will not review or select Concept-stage solutions.

• Concept: An idea being explored and researched for its feasibility to build a product, service, or business model, including prototypes under development. Until the solution has a functioning prototype, we would still consider it a Concept.

How will my solution be evaluated?

Solve’s unique selection methodology is a multi-phase process that includes screening, review, and judging. Expert panels of judges utilize evaluation criteria to assign quantitative scores to each solution. These scores, coupled with qualitative deliberation discussion, determine the selection of winning teams.

The scoring rubric uses the below criteria to assess the solutions: 

• Alignment: The solution addresses at least one of the key dimensions of the Challenge.

• Potential for Impact: The planned solution implementation has the potential to positively impact the holistic wellbeing of rare disease patients and their caregivers.

• Feasibility: The team has a realistic and practical plan for implementing the solution, and it is feasible in the given context.

• Innovative Approach: The solution approaches the problem in a new or significantly improved way. Includes a new innovation or technology, a new application of an existing innovation or technology, a new business model, or a new process for solving the challenge.

• Inclusive Human-Centered Design: The solution is designed with and for underserved communities. The solution team demonstrates proximity to the community and both embodies and addresses diversity, equity, and inclusion throughout the design, implementation and internal operations of the solution. Per the eligibility, protected characteristics such as race, color, sex, sexual orientation, gender identity, religion, disability, age, genetic information, veteran status, ancestry, national or ethnic origin will not be a factor in determining whether or not a group is eligible for The Amgen Prize or a factor in awarding The Amgen Prize.

• Scalability: The solution can be scaled to affect the lives of more people within its target population.

• Plan to Leverage Funding: The applicant clearly explains how the solution would benefit from the funding that The Amgen Prize will provide.

Table of Contents

Information Session Recording

Who can apply to The Amgen Prize?

How will my solution be evaluated?

What is The Amgen Prize timeline?

What will I receive if my solution is selected?

Information Session Recording

Who can apply to The Amgen Prize?

Please refer to the Eligibility section.

How will my solution be evaluated?

Please refer to the Evaluation section.

What is The Amgen Prize timeline?

• Challenge opens for submissions: April 29, 2024

• Challenge closes for submission: June 24, 2024 (Extended from June 20, 2024)

• Finalist selection announcement: by August 12, 2024

• Virtual pitch event: September 5

• Live pitch event and winner announcement: September 24 - 25

  • At Concordia Annual Summit in New York City 

*While we aim to follow the schedule above, the following dates are subject to change. All applicants will be notified if changes occur. 

What will I receive if my solution is selected?

Finalists will have two opportunities to present their solutions in front of distinguished judges during the selection process. The first pitch event will be a virtual, closed-door session with the judges and MIT Solve staff. 

The final pitch event will take place September 24-25 at the 2024 Concordia Annual Summit in New York City. Here, finalists will have the chance to showcase their solutions publicly, meet with judges, and attend the live winner announcement on the Concordia Annual Summit main stage. 

$150,000 in prize funding is available for one winning solution team.

June 5, 2024

10:00 - 10:45am EDT

This informational session is your opportunity to learn more about the Amgen Prize: Innovation for Patients with Rare Diseases powered by Amgen and MIT Solve. Join to learn more about the application, timeline, eligibility requirements, available benefits and award, and more.

The Challenge is open from April 29 to June 24, 2024, 11:59am EDT (midday). You can continue to edit and work on your application anytime before the deadline.

This information session has passed! Please see the recording of the session below: