Undiagnosed Diseases Network Foundation

Undiagnosed Diseases Network Foundation

Problem: Millions globally face the odyssey of undiagnosed, ultra-rare and rare diseases. Over 400 million people worldwide have rare diseases, with an estimated half remaining undiagnosed. The average diagnosis takes five years, marked by frustration, duplicative testing, lack of support navigating the journey and emotional toll.

Scale: This is a global challenge. In the US alone, an estimated 30 million people live with rare diseases. The lack of a diagnosis delays treatment, hinders access to support services, and fuels feelings of isolation for these patients and families.

Contributing Factors:

• Limited awareness: Many healthcare providers lack expertise in rare diseases, leading to misdiagnosis or delayed diagnosis.
• Fragmented healthcare systems: Patients navigate complex systems, often requiring referrals and travel for specialist consultations.
• Financial burden: The cost of undiagnosed, ultra-rare and rare disease illness is significant, with patients facing out-of-pocket expenses and potential job loss.

Our Solution Connects:

The Undiagnosed Diseases Network Foundation (UDNF) proposes expanding our Patient Navigation Program to train rare disease patients and their families as "Rare Disease Navigators" to address these challenges. Our program directly connects patients with trained navigators, that have lived experience and understand the complexities of undiagnosed, ultra-rare and rare diseases. This network will:

• Reduce diagnostic delays: Navigators will guide patients through the healthcare system, advocating for appropriate testing and specialist referrals.
• Optimize holistic care: Navigators will connect patients with relevant local resources, including financial aid programs and mental health services.
• Foster community: Navigators will facilitate local support groups and online communities, reducing isolation and fostering peer support.
• Empower patients: Navigators will equip patients with the knowledge and tools to manage their daily care effectively.

This program has the potential to be replicated nationally and internationally, offering a scalable solution to a global challenge.

Imagine a powerful network of "Rare Disease Navigators" built upon the expertise rare disease patients and the Undiagnosed Diseases Network Foundation (UDNF). This program leverages our existing Patient Navigation Program, experienced Patient Navigators, and the wisdom of the Patient Engagement and Empowerment Resource Group (PEER Group) to empower patients with undiagnosed, ultra-rare or rare conditions.

Here's how it works:

• Building on Strength: This program expands upon our successful Patient Navigation Program, providing dedicated Rare Disease Navigators who have both lived experience and training for specialized support.
• Experienced Navigators: We leverage the expertise of our existing Patient Navigators, equipping them to train Rare Disease Navigators around the country. 
• PEER Group Mentorship: The invaluable knowledge and lived experiences shared by the PEER Group will work with our Patient Navigators to help mentor and guide Rare Disease Navigators, ensuring a patient-centric approach.
• Matching and Connection: Patients connect with a local Rare Disease Navigator based on their specific condition, location and/or language needs.
• Empowering Navigation: Navigators don't diagnose, but they equip patients with knowledge and tools. They help navigate the healthcare system, advocating for appropriate testing and specialist referrals.
• Holistic Support: Navigators connect patients with relevant local resources - financial aid programs, mental health services, and support groups.
• Building Community: Navigators facilitate local in-person and online support groups, fostering a sense of belonging and peer-to-peer learning.

Innovation:

This program leverages the collective power of rare disease patients and a geographically dispersed network built upon the existing infrastructure of the UDNF and the Undiagnosed Diseases Network. Unlike centralized resources, Navigators offer personalized support tailored to local healthcare systems and available resources. The program utilizes existing patient advocacy groups and medical centers, making it scalable and sustainable. 

This innovative approach empowers patients, reduces diagnostic delays, and fosters a supportive community.

• Through the Patient Navigation program for the Undiagnosed & Ultra-rare, we can easily expand and enhance our ability to improve the journey for more rare disease patients efficiently and effectively. We’ve already built the wheel.

• Data collection and learnings from analyzing the data from our current Patient Navigation program will provide complimentary insights as well as the framework to expand our continuum of care throughout the rare disease experience.

• Building on our network of PEER members and UDN patients and families, we can activate and empower this community to use their lived experiences to support and improve the lived experiences for others.

• Our awareness of the importance of holistic care is reflected in our navigators who come from varied life and professional experiences and are unified with our mission. 

• Our upcoming community events, Undiagnosed. Ultra-Rare. Unified. are designed to engage and connect patients, families and caregivers as well as reach out to underserved and underrepresented patients who are not yet connected to the rare disease community. 

• We have curated and developed a comprehensive array of resources and information to support the daily care management for a variety of population groups (children, teens, young adults, adults, LGBTQIA, BIPOC, siblings, caregivers).

The "Rare Disease Navigators" program directly serves two underserved populations facing significant challenges:

1. Patients with Undiagnosed, Ultra-rare and Rare Diseases: Millions globally grapple with the odyssey of undiagnosed, ultr-rare or rare diseases. These patients often face: 

• Delayed Diagnosis: The average diagnosis takes five years, marked by frustration, duplicative testing, and emotional toll.
• Limited Support and Research: Fragmented healthcare systems, a lack of awareness among providers, and limited resources for undiagnosed cases leave them feeling lost and unsupported. Undiagnosed patients are often excluded from research studies, hindering progress in treatment options.
• Isolation and Anxiety: The struggle for diagnosis, the complexities of rare diseases, and the feeling of being unseen by the medical community can lead to feelings of isolation and anxiety. Underserved communities, including racial and ethnic minorities and low-income populations, face additional barriers due to language and cultural differences, further exacerbating these challenges.

Patients with rare diseases (and their families) often become experts in their own condition through necessity. They navigate complex medical systems, advocate for themselves, and connect with others facing similar challenges. However, this burden of self-advocacy falls heavily on individual patients and their families, often in a disease-specific way.

2. Caregivers for Patients with Undiagnosed or Rare Diseases: Caregivers supporting patients with undiagnosed or rare diseases often experience:

• Burden and Stress: The emotional and logistical challenges of navigating a complex healthcare system can be overwhelming, especially when resources are lacking.
• Lack of Information: Limited awareness surrounding rare diseases leaves caregivers feeling uninformed and unsure of how to best support their loved ones.
• Social Isolation: Focusing on caring for a loved one can lead to social isolation and emotional strain for caregivers, particularly in underserved communities where support networks may be limited.

The Rare Disease Navigators program will:

• Provide Support Systems: Navigators can offer a listening ear, connect patients and caregivers with resources like support groups for shared experiences, and ensure caregivers from underserved communities have access to culturally competent support.
• Empower Patients and Caregivers: Navigators can equip patients and caregivers with knowledge and tools to navigate healthcare systems, advocate for their loved one's needs, and connect them with relevant resources regardless of background.
• Reduce Stress: By providing guidance and connecting them to resources, Navigators can alleviate some of the burden on patients and caregivers, allowing them to better support their loved ones.

Overall Impact:

The "Rare Disease Navigators" program offers a comprehensive and empowering solution. Patients and caregivers, particularly those in underserved communities, will navigate the healthcare system with greater confidence, access essential resources, and find solace in a supportive community. This program has the potential to alleviate the emotional and logistical burden, leading to improved health outcomes, a better quality of life for all involved, and a more inclusive approach to research and care for undiagnosed, ultra-rare and rare diseases. Furthermore, by leveraging the expertise of patients and caregivers, the program creates a sustainable, disease-agnostic model that can be effectively implemented across the entire rare disease landscape. 

The "Rare Disease Navigators" program represents the next phase of growth for our existing initiatives. We're not starting from scratch, but rather extending and scaling the proven success of:

• Scaling Patient Navigation Program: Our Patient Navigation Program has transitioned beyond the pilot stage and is actively scaling its services. This program provides invaluable insights into patient challenges and the support systems needed, informing the development of the Rare Disease Navigators program.
• Established PEER Group Expertise: The Patient Engagement and Empowerment Resource Group (PEER Group) has been operational for over five years. Its members, patients and caregivers with deep rare disease knowledge, have already provided navigation support to hundreds of families. Their lived experiences and expertise will be crucial for training and mentoring future Rare Disease Navigators.

Beneficiaries of Existing Programs:

Our existing efforts have demonstrably helped a significant population:

• Scaling Patient Navigation: Our Patient Navigators have directly assisted hundreds of patients with complex medical cases, offering guidance, advocacy, and emotional support throughout their diagnostic journeys. As the program scales, this impact will continue to grow.
• PEER Group Support: For over five years, the PEER Group has served as a cornerstone of support for hundreds of families facing undiagnosed, ultra-rare and rare diseases. They foster a space for information sharing, peer-to-peer support, and advocacy, directly impacting the rare disease community.

Extending and Scaling for Greater Impact:

By leveraging the experience and expertise gained through our existing programs – the scaling Patient Navigation Program and the established PEER Group – we propose extending and scaling these successful models. The "Rare Disease Navigators" program will build upon this foundation, expanding the reach and impact of our current efforts. This program has the potential to empower patients on a national scale, strengthen communities, and ultimately improve the lives of those affected by rare diseases. 

The "Rare Disease Navigators" program offers a multifaceted approach to address the challenges of undiagnosed, ultra-rare and rare diseases, setting itself apart through several key innovations:

1. Leveraging a Geographically Dispersed Network:

Unlike centralized resources, our program utilizes a network of Rare Disease Navigators embedded within their local communities. This ensures personalized support tailored to the specific healthcare systems and available resources in each region.

2. Building on Existing Infrastructure:

We don't reinvent the wheel. We leverage the expertise of our existing Patient Navigation Program and the wisdom of the PEER Group. This not only reduces implementation costs but also fosters a sense of ownership and collaboration within the rare disease community.

3. Empowering Patients and Caregivers:

The program goes beyond simply providing information. Navigators equip patients with the knowledge and tools to become active participants in their healthcare journey. This fosters self-advocacy and empowers patients to both become Rare Disease Navigators as well as help other patients navigate complex systems with greater confidence.

4. Building Bridges and Fostering Community:

The program connects patients and caregivers with relevant resources and facilitates the creation of local and online support groups. This combats feelings of isolation and empowers the rare disease community through peer-to-peer learning and shared experiences.

5. Disease-Agnostic Model:

By recruiting and training Rare Disease Navigators from diverse backgrounds, specifically patients and caregivers themselves, the program transcends specific diseases. This creates a sustainable, disease-agnostic model that can be effectively implemented across the entire rare disease landscape.

Catalyzing Positive Impact:

The "Rare Disease Navigators" program has the potential to inspire broader positive change in the field of rare diseases:

• Replication and Collaboration: The program's reliance on existing infrastructure and a geographically dispersed network makes it easily replicable by other patient advocacy groups and medical centers, fostering collaboration across the rare disease landscape.
• Standardization of Care: By providing a scalable model for patient navigation, the program can contribute to standardizing the level of support offered to patients with rare diseases across healthcare systems.
• Empowering Patients as Stakeholders: The program's focus on patient empowerment can inspire a shift in the dynamic between patients and healthcare providers, encouraging a more collaborative and patient-centered approach to rare disease management.
• Expanding Research Opportunities: Stronger patient-provider connections can lead to increased participation in research studies. This can accelerate advancements and improve treatment options for rare diseases.

Conclusion:

By combining a geographically dispersed network, disease-agnostic approach, and focus on both patient empowerment and community building, the "Rare Disease Navigators" program offers a novel and impactful solution. This innovative model has the potential to not only improve the lives of patients and caregivers but also inspire positive change across the entire field of rare diseases.

The Undiagnosed Diseases Network Foundation (UDNF) is applying for the Amgen Prize to overcome financial and other barriers hindering our ability to fully implement and scale the Patient Navigation Program by training the Rare Disease Navigators. The Amgen Prize's generous support will address these challenges and accelerate our efforts to empower patients and families facing undiagnosed, ultra-rare and rare diseases.

Financial Barriers:

• Program Expansion: Scaling the Rare Disease Navigators program nationally requires funding for recruitment, training, and ongoing support of Navigators. The Amgen Prize will help us bridge this financial gap, allowing us to establish a robust national network.

Technical Barriers:

• Technology Infrastructure: Developing a secure and user-friendly online platform to connect patients with Navigators and foster online communities requires significant technical expertise and resources. Amgen Prize funding will enable us to invest in this critical infrastructure.

Market Barriers:

• Raising Awareness: Building public and healthcare provider awareness about the program and the needs of the rare disease community is essential for its success. The Amgen Prize's visibility and recognition will significantly enhance our outreach efforts.

How the Amgen Prize Will Help:

The Amgen Prize will provide the resources and recognition needed to overcome these barriers and propel the "Rare Disease Navigators" program forward. Here's how:

• Financial Support: Funding will enable us to expand the program nationally, recruit and train Rare Disease Navigators, and develop a user-friendly online platform.
• Technical Expertise: The Amgen Prize network may connect us with experts who can assist with developing the online platform and other technical needs.
• Public Recognition: The Prize's reputation will elevate our profile, attracting public attention and encouraging collaboration with healthcare providers and patient advocacy groups.

Beyond Overcoming Barriers: A Catalyst for Change

We believe that the Amgen Prize is not just about overcoming obstacles but about inspiring a broader movement for change. Winning the Prize will:

• Validate Our Model: Recognition by the Amgen Prize will strengthen our credibility and attract additional funding opportunities to sustain and scale the program.
• Promote Collaboration: The Prize will provide a platform to share our model with other organizations, fostering collaboration and replication across the rare disease community.
• Empower Patient Advocacy: The recognition will empower patient advocacy groups to advocate for more comprehensive support systems for patients with rare diseases.

Conclusion:

The Amgen Prize represents a transformative opportunity for the Undiagnosed Diseases Network Foundation. By overcoming financial, technical, and market barriers, we can further build out the Patient Navigation and PEER programs through the "Rare Disease Navigators" program, empowering patients and families, and ultimately creating a landscape where no one faces a rare disease alone. We are confident that with the Amgen Prize's support, we can turn this innovative solution into a lasting legacy for the rare disease community.  

The Undiagnosed Diseases Network Foundation (UDNF) is led by a team with an unwavering commitment to empowering patients and families facing undiagnosed, ultra-rare and rare diseases. Their diverse backgrounds and expertise are a powerful force in shaping the vision and impact of the UDNF.

Leadership with a Proven Track Record:

• Amy Gray, CEO: Amy brings over 20 years of experience in healthcare philanthropy and rare disease research and patient engagement to the UDNF. Prior to joining UDNF, she served as CEO of the Charcot-Marie-Tooth Association (CMTA), the largest philanthropic funder of research for Charcot-Marie-Tooth disease (CMT). During her tenure at the CMTA, Amy's leadership was instrumental in growing the organization's capacity to accelerate research and provide critical support to patients and families living with CMT. Her proven ability to lead and navigate the complexities of the rare disease landscape is a tremendous asset to the UDNF.

Patient Navigation Program Expertise:

• Michele Herndon: Michele oversees the UDNF's Patient Navigation Program. Her passion for patient advocacy stems from a deeply personal place. Michele's son, Mitchell, suffered from a rare, undiagnosed genetic disorder for years prior to getting a diagnosis of a newly discovered disease, Mitchell Syndrome, named after him.  This lived experience has fueled Michele's dedication to supporting patients and families on their often-challenging diagnostic journeys. Michele's extensive experience in patient navigation, coupled with her deep understanding of the emotional and logistical hurdles faced by individuals with complex medical conditions, makes her an invaluable asset to the Rare Disease Navigators program.

PEER Group: A Force for Advocacy and Support

• Stephanie Tomlinson and Jessica Swanson, PEER Co-Chairs: Stephanie and Jessica co-chair the PEER Group, a cornerstone of the UDNF. They, along with all PEER Group members, bring a wealth of personal and professional experience with undiagnosed, ultra-rare, and rare diseases. Their lived experiences and unwavering advocacy for the rare disease community will be crucial in training and mentoring Rare Disease Navigators. The PEER Group ensures the program is patient-centric and addresses the specific needs of the population it serves.

A Collaborative Spirit:

The UDNF fosters a collaborative environment where diverse perspectives and expertise are valued. This approach ensures that the Rare Disease Navigators program is not only innovative but also grounded in the realities faced by patients, caregivers, and the broader rare disease community.

Beyond Qualifications: A Shared Passion

What truly unites the UDNF team is a shared passion for making a difference in the lives of those affected by undiagnosed, ultra-rare and rare diseases. This passion fuels their commitment to developing innovative solutions like the Rare Disease Navigators program and propels them forward in their mission to create a world where no one faces a rare disease alone.

The Rare Disease Navigator program aims to empower individuals and families affected by rare diseases by providing them with critical support and resources. Here's a breakdown of our impact goals for the next year and the next five years:

Next Year (2025):

• Impact Goal: Increase the number of program participants who report feeling informed, connected, and supported in navigating their rare disease by 20%.
• How to Achieve:
  • Expand program reach through partnerships with patient advocacy groups and healthcare institutions.
  • Develop a comprehensive resource library tailored to specific rare diseases.
  • Facilitate peer-to-peer support networks for knowledge sharing and emotional well-being.
• How to Measure:
  • Conduct pre- and post-program surveys to assess participant knowledge, access to resources, and sense of community.
  • Track program enrollment and participation rates in support groups and resource utilization.
  • Monitor user feedback and satisfaction with program offerings.

Next Five Years (2024-2029):

• Impact Goal: Become a nationally recognized program that significantly improves the lives of individuals and families living with rare diseases.
• How to Achieve:
  • Advocate for policy changes that improve access to diagnosis, treatment, and research for rare diseases.
  • Partner with researchers to facilitate clinical trial participation and accelerate treatment development.
  • Develop educational materials for healthcare professionals to improve diagnosis and care for rare diseases.
• How to Measure:
  • Track the number of individuals connected to research opportunities and clinical trials.
  • Monitor changes in national policies impacting rare disease research and treatment access.
  • Measure public awareness and recognition of the program through surveys and media mentions.

Ultimately, the success of the Rare Disease Navigators program will be measured by the tangible improvements in the lives of those affected by rare diseases. We strive to empower patients and families with the knowledge, connections, and support they need to navigate their journeys more effectively.

The Rare Disease Navigator program tackles the overwhelming challenges faced by individuals and families living with rare diseases. Here's a breakdown of how our program activities lead to positive outcomes:

Problem: Individuals and families dealing with rare diseases often feel isolated, overwhelmed by complex information, and struggle to access essential resources.

Activities:

• Education & Awareness: We develop and deliver educational resources on various aspects of rare diseases, empowering participants with knowledge about diagnosis, treatment options, clinical trials, and patient advocacy.
• Peer Support Networks: We facilitate connections between individuals and families facing similar experiences, fostering emotional support and information sharing.
• Resource Navigation: We connect participants with relevant specialists, patient advocacy groups, and clinical trials, ensuring they find the specific help they need.

Immediate Outputs:

• Increased knowledge and understanding of rare diseases.
• Enhanced emotional well-being and sense of community through peer support.
• Improved access to specialists, treatment options, and clinical trials.

Longer-Term Outcomes:

• Increased Confidence: Participants feel more confident in navigating their rare disease journey due to acquired knowledge and support systems.
• Improved Health Management: Participants can better manage their disease through access to specialists and treatment options.
• Empowered Advocacy: Program participants become empowered to advocate for themselves and raise awareness about rare diseases.

Evidence Supporting the Links:

• Research by the National Organization for Rare Disorders (NORD) indicates that patient education is crucial for improving self-management and reducing anxiety in rare disease cases.
• Studies by the Patient Advocate Foundation highlight the positive impact of peer support groups on mental health and emotional well-being for patients with chronic illnesses.
• Data from organizations like NORD shows that connecting patients with specialists and resources leads to better treatment outcomes and improved quality of life.

Why this Works:

The program addresses the core issues of information overload, isolation, and resource scarcity faced by the rare disease community. By providing education, facilitating support networks, and helping navigate resources, the program equips participants with the knowledge, tools, and emotional support they need to manage their condition effectively.

Feeling empowered and informed allows individuals to make better decisions about their health, leading to improved health outcomes and a stronger voice within the rare disease community. The program's long-term goal is to create a ripple effect, with empowered patients advocating for better access to care and research advancements for all those affected by rare diseases.

The Rare Disease Navigators program is supported by a team with diverse expertise. 

We have 7 staff members and 4 consultants managing the program's operations.

A volunteer board of 15 directors provides strategic guidance and ensures program alignment with the organization's mission.

11 PEER (Patient Engagement & Education Resource) advisors offer valuable insights and ensure the program remains patient-centric.

The program connects participants with a vast network of 100+ UDN (Undiagnosed Disease Network) affiliated clinicians, providing access to a wide range of rare disease specialists.

This collaborative team, exceeding 130 individuals, works tirelessly to support the Rare Disease Navigators program. 

The Patient Navigation Program has been under development for more than one year. It builds upon the strong foundation of the PEER program, which has been in development for over five years.

The PEER program's success in providing patient-centered education and support served as a springboard for the development of the Patient Navigation Program. Rare Disease Navigator Program.  This layered approach allows the Rare Disease Navigators Program to leverage trust and expertise while offering a more comprehensive service. 

The Rare Disease Navigators program is firmly committed to creating a diverse, equitable, and inclusive environment for our team members. We recognize that a team with a wide range of backgrounds, experiences, and perspectives leads to a more effective and impactful program. Here's how we strive to achieve this:

Diversity in Leadership and Staff:

• Board Composition: We were intentional in building a Board of Directors with diverse backgrounds and perspectives. This includes ensuring representation from various ethnicities, genders, and professional disciplines.
• Staff Recruitment: During recruitment, we actively seek out candidates from diverse backgrounds and advertise positions on platforms that reach a wider audience. We also utilize skills-based interviewing practices that focus on qualifications over perceived advantages based on background.
• Multilingual Support: We are fortunate to have bilingual staff, board members, and volunteers. This allows us to better serve a wider population of patients and families facing language barriers within the rare disease community.

Minimizing Barriers to Opportunity:

• Flexible Work Arrangements: We offer flexible work arrangements whenever possible to accommodate diverse needs and lifestyles. This can help address challenges related to childcare, eldercare, or geographical limitations.
• Professional Development: We provide professional development opportunities for all staff members, regardless of background. This helps everyone grow in their roles and fosters a culture of continuous learning.
• Mentorship Programs: We are exploring the development of mentorship programs to connect experienced team members with new hires, especially those from underrepresented backgrounds. Mentorship can provide valuable guidance and support, promoting career advancement.

Building a Welcoming and Inclusive Environment:

• Inclusive Communication: We strive for clear and inclusive communication across all levels of the team. This involves being mindful of language choices and ensuring everyone feels comfortable expressing their ideas and concerns.
• Cultural Sensitivity Training: We are committed to providing cultural sensitivity training for our team members. This training helps build awareness of different cultural backgrounds and fosters respectful interactions within the team.
• Employee Resource Groups (ERGs): We are exploring the establishment of Employee Resource Groups (ERGs) for staff members who share similar backgrounds or interests. These groups can provide a space for connection, support, and advocacy within the organization.

Goals for Continuous Improvement:

We acknowledge that building a truly diverse, equitable, and inclusive team is an ongoing process. Here are some of our goals for the future:

• Conduct regular surveys to assess team members' experiences and identify areas for improvement.
• Partner with organizations dedicated to diversity and inclusion to gain new insights and best practices.
• Track the demographics of our team to measure progress towards a more diverse staff and leadership.

By continuously working towards these goals, the Rare Disease Navigators program aims to foster a workplace where everyone feels valued, respected, and empowered to contribute their unique talents to supporting the rare disease community.

The Rare Disease Navigators Program operates under a social value business model, prioritizing the well-being of individuals and families affected by rare diseases over profit generation. Here's a breakdown of the key components:

Target Population:

• Individuals diagnosed with rare diseases
• Families and caregivers supporting individuals with rare diseases

Value Proposition:

• Empowerment: We equip participants with the knowledge and tools needed to navigate their rare disease journey effectively.
• Support: We provide emotional support and connect participants with a community of peers facing similar challenges.
• Access: We facilitate access to essential resources, including specialists, patient advocacy groups, and clinical trials.

Products & Services:

• Educational Resources: Webinars, guides, and informational materials on various aspects of rare diseases.
• Peer Support Networks: Online and in-person communities for connecting and sharing experiences.
• Navigation Assistance: Personalized guidance to connect participants with relevant specialists, treatment options, and clinical trials.

Delivery Channels:

• Website: Serves as the program's hub, providing access to resources, information, and online support groups.
• Telehealth: Enables virtual consultations with program staff and access to educational materials.
• Community Events: Workshops, seminars, and support group meetings held in local communities.

Why Beneficiaries Need It:

• Individuals and families facing rare diseases often feel overwhelmed by complex information and struggle to find the support and resources they need.
• The program addresses this gap by providing a centralized platform for information, emotional support, and personalized navigation assistance.

Revenue Model (Social Value Model):

• Grants: The program seeks grants from foundations, government agencies, and philanthropic organizations dedicated to supporting rare disease research and patient care.
• Donations: Individual contributions and fundraising events provide additional financial support.
• Partnerships: Collaboration with pharmaceutical companies and research institutions can lead to co-developed resources and funding opportunities.

Sustainability:

• The program strives for long-term sustainability through a diversified funding strategy and ongoing evaluation of its impact on the rare disease community. By demonstrating the program's effectiveness in improving the lives of patients and families, we aim to secure continued support from donors and partners.

Overall, the Rare Disease Navigators Program leverages a social value business model to empower individuals with rare diseases, improve their access to resources, and create a more supportive environment for navigating their unique challenges.

The Rare Disease Navigators Program is committed to achieving long-term financial sustainability to ensure its continued support for the rare disease community. 

Diversified Funding Strategy: We recognize the importance of diversifying our revenue streams to mitigate dependence on any single source. Our plan includes:

• Grants: Secure funding from foundations, government agencies, and philanthropic organizations dedicated to rare diseases. We have secured a grant from the Chan Zuckerberg Initiative to support the program.

• Donations: Encourage individual contributions and hold fundraising events.
• Partnerships: Collaborate with pharmaceutical companies and research institutions, with a focus on demonstrating the program's cost-effectiveness in patient navigation. We are currently in discussions with partners to co-develop resources for patients, potentially leading to joint funding opportunities tied to demonstrating reduced healthcare costs through improved navigation.

Focus on Measurable Impact with Cost-Savings in Mind: We believe demonstrating the program's positive impact, including cost savings, is crucial for securing ongoing funding. We are committed to:

• Impact Measurement: Regularly track key metrics like program participation, patient satisfaction, and improved access to resources, alongside metrics focused on cost reduction:
  • Reduced Diagnostic Odyssey Length: Track the time it takes for participants to receive a diagnosis after program enrollment compared to historical averages. Shorter diagnostic odysseys translate to reduced healthcare utilization and lower overall costs.
  • Improved Treatment Efficiency: Monitor the number of unnecessary tests and procedures avoided through better navigation and earlier access to specialists.
  • Increased Patient Engagement: Measure participant adherence to treatment plans and disease management protocols, leading to potentially fewer hospitalizations and complications.
• Data-driven Reporting: Use data to create compelling reports that showcase the program's effectiveness, cost savings (reduced healthcare utilization), and ROI (Return on Investment) for potential donors, partners, and payers (insurance companies).

Sustainability Strategies:

• Cost-Effectiveness: Utilize technology (website, telehealth) and volunteers to optimize program delivery while maintaining high-quality services.
• Scalability: Design the program to be scalable, allowing us to serve a larger population with minimal additional resources.
• Partnership Expansion: Continuously build partnerships with organizations that share our mission, broadening our funding base and reach, with a particular focus on healthcare payers who may benefit from reduced costs associated with rare disease management.

Gathering Evidence for Cost Savings:

We are actively gathering data to demonstrate the program's ability to reduce costs for patients, healthcare systems, and society as a whole. This data will be crucial for attracting funding from payers who stand to benefit from a more efficient and cost-effective approach to rare disease management.

Transparency:

While we may not be able to disclose specific financial details due to confidentiality agreements, we are committed to transparency. We will use internal data and ongoing evaluations to inform our funding strategies and adapt them as needed.

Overall, the Rare Disease Navigators Program's strategy for financial sustainability combines a diversified funding approach with a focus on measurable impact, including cost savings. Our initial success, commitment to cost-effectiveness, and focus on gathering data to quantify the program's financial benefits position the program for long-term viability and continued service to the rare disease community.