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The 2024 Amgen Prize – MIT Solve Pitch Competition

SpeakerS:

Noel Shaskan, Health Community Lead, MIT Solve
Donna Appell, Executive Director, HPS Network Inc.
Nadia Bodkin, Founder, Rare Advocacy Movement (RAM)
Dr. Margaret Faul, VP Drug Substance Technologies & Site Head, Amgen Massachusetts, Amgen
Diego Fernando Gil Cardozo, Executive Director, Federación Colombiana de Enfermedades Raras FECOER
Michael Hund, CEO, EB Research Partnership
Yasmeen Long, Director, FasterCures, The Milken Institute
Ignacio Munoz-Sanjuan, President, Factor-H
Jill Pollander, Vice President of Patient Services, National Organization for Rare Disorders (NORD)
Gabriela Repetto, Director, Rare Diseases Program, Facultad de Medicina, Clínica Alemana Universidad del Desarrollo
Mincheol Song, CEO, Voice of Calling NPO
Ashley Winslow, CEO, CSO, Odylia Therapeutics
Durhane Wong-Rieger, President & CEO, Canadian Organization for Rare Disorders
Winston Yan, Founding President, N=1 Collaborative

With Core Programming Sponsor

“These doctors, they're just so unbelievable, but it's like Doctors Without Borders—they're kind of coming together to do this for us.” Donna Appell
“Bringing these skill sets and making them accessible to the rare disease community allows us to not just affect one disease at a time, but we hope for hundreds of diseases.” Ashley Winslow
“We want to create a platform where all of this information can be tailored to their specific community needs in different cultural environments.” Ignacio Muñoz-Sanjuán
“At Amgen, we are passionate about serving patients around the world, helping them live longer, happier, and healthier lives.” Margaret Faul

Key takeaways:

  • The crucial role of caregiver support in health systems: Caregivers of patients with rare diseases often bear immense physical, psychological, and emotional burdens but are often overlooked. Engaging caregivers directly in program design and tailoring resources to their cultural contexts enhances intervention effectiveness. 
  • Leveraging nonprofit expertise to accelerate therapeutic development: Nonprofit organizations are uniquely positioned to bridge gaps in  drug development  for the rare disease community. Initiatives like the Odylia Collective aim to impact hundreds of diseases by sharing knowledge and resources, enabling broader community participation in therapeutic advancement. 
  • Community engagement as a pillar for resilient health systems: Programs that operate at the local level, involving community leaders and healthcare professionals, are essential for addressing health disparities and improving patient outcomes. The pandemic underscores the necessity of integrating local knowledge into public health strategies.
  • Innovation in addressing health disparities exposed by the pandemic: Innovative solutions, such as data coordination centers for individualized treatments, can help bridge the gaps in healthcare exacerbated by the pandemic. Technology platforms are essential for knowledge sharing and collaborative problem-solving.
  • The importance of cross-sector partnerships: Collaboration between nonprofits, governmental agencies, and industry partners is vital for designing public health systems capable of addressing both acute and long-term health challenges. 

Action items:

  • Develop and expand caregiver support programs: Create tailored support platforms that provide educational resources and equipment to caregivers, involving them in program development to effectively address their needs and enhance patient care. 
  • Increase accessibility to drug development expertise: Support nonprofits in building accessible models for therapeutic development, enabling wider participation from the rare disease community, and promote knowledge sharing to accelerate treatment for underserved populations.
  • Strengthen community-level health initiatives: Invest in local programs that work with community leaders to address health disparities magnified by the pandemic, integrating local insights into public health strategies. to enhance resilience and responsiveness. 
  • Promote innovation in data sharing and collaboration: Support the creation of data coordination centers to facilitate individualized treatments and encourage technology use for enhanced stakeholder collaboration in health crisis responses. 
  • Facilitate cross-sector partnerships: Encourage collaboration between nonprofits, industry experts, and government agencies to combine expertise in public health planning and ensure equitable healthcare delivery. 

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