The Amgen Prize: Innovation for Patients with Rare Diseases
Genomic Sequencing for all Rare Cancer Patients
What is the name of your solution?
Genomic Sequencing for all Rare Cancer Patients
Provide a one-line summary of your solution.
Revolutionizing rare cancer care by offering free genomic testing to patients, enabling targeted treatments and life-saving outcomes.
In what city, town, or region is your solution team headquartered?
Durham, North Carolina, USAIn what country is your solution team headquartered?
In which countries do you currently operate?
What specific problem are you solving?
We are addressing a critical gap in the diagnostic and treatment journey for rare cancer patients: access to genomic sequencing. People diagnosed with rare cancers face significant barriers to timely and accurate diagnosis and effective treatment, with an average of five years to receive an accurate diagnosis, compounded by the lack of FDA-approved treatments for 95% of these diseases. While evidence supports using genomic sequencing for first-line standard of care for rare diseases, up to 80% of rare cancer patients are treated at hospitals where genomic testing is not the standard of care. This forces rare cancer patients to advocate for genomic testing on an individual basis, leaving problematic gaps due to education, advocacy, knowledge, bias, finances, and other barriers to equitable care. Many, unfortunately, never receive genomic sequencing or don’t receive it until it’s too late - never finding out that there was a targeted option that could have been an effective treatment or a clinical trial they could have qualified for.
When the founder of the Rare Cancer Research Foundation, Mark Laabs, received a diagnosis of a rare cancer called uveal melanoma, he asked experts at top academic hospitals what options he had and heard a common refrain for rare cancer patients, “We’re sorry but your cancer is so rare that we know very little about it and don’t have a proven treatment for you.” Mark passed away in February but he paved a roadmap for other patients that includes early and streamlined access to genomic sequencing.
While individually rare, rare cancers together make up over 27% of cancer diagnoses in the US and even more globally. In the United States alone, an estimated 1.6 million people are living with a rare cancer and over 500,000 people are newly diagnosed every year. Depending on definitions and as we learn to more accurately characterize all cancers, this number increases significantly. Unfortunately, rare cancers represent a significant unmet need. This population faces poorer outcomes and higher mortality rates.
Genomic sequencing must be a part of the diagnostic journey for all rare cancer patients for three reasons. First, it provides information on specific mutations and biomarkers that can help clinicians choose more targeted and effective treatment options. Second, it helps match patients with clinical trials by these molecular markers, providing oftentimes life-saving clinical trials to participate in that would not be available to them without the knowledge of these markers. And third, it adds to the paucity of data about these rare cancers enabling researchers better understand and study them, leading to the innovations and better treatment options of tomorrow. Unfortunately, none of these things are possible if rare cancer patients are not being offered genomic sequencing as a step in their diagnostic and treatment journey.
What is your solution?
Our solution is a comprehensive program to provide free genomic sequencing to every rare cancer patient in the country. Built upon the Rare Cancer Research Foundation’s Pattern.org platform, this solution can be implemented and scaled quickly with support from the Amgen Prize. Pattern.org today is a live tissue donation platform and virtual protocol that enables any rare cancer patient, being seen at any hospital in the country, to donate their live tissue from a surgery to a researcher studying their disease. Our solution is to add genomic sequencing as a streamlined option for all, enabling any rare cancer patient to have easy access to this resource.
How it works:
Tissue Donation via Pattern.org:
Patient Opt-In: Any rare cancer patient can consent to Pattern.org’s virtual protocol to have a portion of their tumor tissue from a surgery or biopsy used for genomic sequencing and/or sent to a researcher or biobank.
Tissue Collection: The tissue is collected during surgery, sent via FedEx directly to our sequencing partners, and coordinated by the Pattern.org team, which has successfully managed tissue donations from over 120 hospitals.
Genomic Sequencing:
Sequencing Partners: The collected tissue is sent to one of our CLIA-certified genomic sequencing partners, such as BostonGene or Tempus. We maintain a company-agnostic approach, ensuring flexibility and quality by partnering with multiple accredited laboratories.
Sequencing Process: The next generation genomic sequencing (whole exome / RNA sequencing) is performed by these labs, analyzing the tumor's molecular characteristics to identify mutations and other genomic information.
Reporting and Results:
Data Compilation: Once the sequencing is completed, a comprehensive report detailing the findings is compiled and matches with potential treatment options and clinical trials is compiled by our partners.
Results Distribution: The report is sent to the patient and their clinician. This information is critical for developing personalized treatment plans and exploring targeted therapy options.
This initiative will also ensure that genomic sequencing is not creating a financial burden on patients. The Rare Cancer Research Foundation and our genomic sequencing partners are committed to ensuring that these reports are either covered by a patients’ insurance company or that the support from the Amgen Prize catalyzes funding that will cover the costs for any non-insured or under-insured patients.
Our solution represents a significant step forward in rare cancer care by combining the power of genomic sequencing with a well-established tissue donation platform. This integration provides patients with critical diagnostic information that can lead to more effective, personalized treatments, enhanced participation in clinical trials, and more data on rare cancers. Together, we will ensure that every rare cancer patient, regardless of the hospital they receive care or their financial situation, will have the opportunity to access genomic sequencing.
Who does your solution serve, and in what ways will the solution impact their lives?
Our solution serves any rare cancer patient in the United States who has not received genomic sequencing as a part of their diagnostic and treatment journey. These patients are currently underserved in several ways: they experience delays in diagnosis, limited access to advanced diagnostic tools, and high out-of-pocket expenses. These barriers contribute to significant physical, emotional, and financial burdens on both patients and their caregivers. Many patients never find out about genomic sequencing and its importance. If they do, it is frequently late in their cancer journey where time has passed, their cancer has progressed, and their options are quickly limited.
At some top cancer centers, genomic sequencing is streamlined and considered best practice, but most rare cancer patients are not receiving this option. In a study done by a rare cancer advocacy group the Chondrosarcoma Foundation, only 18.9% of patients received genomic sequencing, and there was no data on when in their cancer journey this was done. Accessing a comprehensive cancer center is not possible for many rare cancer patients and clinician discretion can introduce bias and unequal access. Our Genomic Sequencing initiative is institution-agnostic and we work directly with patients anywhere in the US at any hospital in the country.
In cases where a genomic sequencing report reveals actionable findings like a FDA-approved therapy matched to a mutation on their tumor, or a clinical trial open to a marker found on their report, this solution could meaningfully improve outcomes and give these patients the best chance at a longer life.
For patients whose genomic sequencing report does not reveal actionable results at this time, this solution still offers significant value. First, the report could be actionable in the near future as new treatments or trials become available. Second, it provides peace of mind by ensuring they have explored every possible avenue for treatment. While they may not have discovered a new or effective treatment option, knowing they have left no stone unturned is meaningful and reassuring for many rare cancer patients and their families. This knowledge can alleviate the emotional burden of uncertainty, affirming that they have utilized the best available resources to combat their illness.
Either way, increasing access to genomic testing has a population-level benefit. So little is known about these cancers, and even their basic biology is often unknown to researchers. Individual patients and their clinicians are left grasping at publicly available information but there is very little to be found. As the cost of sequencing and the time to receive results has decreased, generating more data on rare cancers holds incredible promise for the future of rare cancer research.
In summary, our solution ensures that all rare cancer patients have access to genomic sequencing. It empowers patients with knowledge about their condition, enabling them to make informed decisions about their care, and improving their overall quality of life. This will lead to better-informed treatment decisions, improved patient outcomes, and a deeper understanding of rare cancers, ultimately advancing research and care for this underserved population.
Which dimension of the Challenge does your solution most closely address?
Improve the rare disease diagnostic journey – reducing the time, cost, resources, and duplicative travel and testing for patients and caregivers.What is your solution’s stage of development?
GrowthWhat makes your solution innovative?
What makes this solution innovative is its ability to empower individual patients while enabling collective progress against rare cancers. By providing access to cutting-edge genomic sequencing, we empower patients with the latest diagnostic tools, offering them hope for better treatment outcomes. At the same time, this approach generates valuable data that propels forward rare cancer research, driving new discoveries and breakthroughs. This dual impact ensures that advancements in genomic technology not only benefit each patient but also contribute to a brighter future for the entire rare cancer community. Our solution embodies a vision where individual care and collective innovation go hand in hand, inspiring hope and progress for all.
This solution is also innovative because it is truly patient-centric. By creating access through a virtual site protocol, this solution empowers patients directly and creates access regardless of institutional barriers. Our program places patients at the center of its mission, ensuring patients are involved and in control during every step of the process - from the moment they consent to the moment they receive the CLIA-approved genomic sequencing report. Its approach is equitable at its core, building this capability from any institution, in any zip code, ensuring that every patient is able to access its promise. We believe this will create a model that many rare diseases can follow - ensuring diagnostics and treatment options are more equitable and more broadly accessed.
Additionally, the genomic data collected through our program will be anonymized, with patient consent, and shared with researchers, contributing to a larger data commons that can be used to identify new treatment targets and develop innovative therapies. This can accelerate research in rare cancers and potentially lead to breakthroughs in understanding and treating these complex diseases.
By demonstrating the feasibility and benefits of providing free genomic testing to rare cancer patients, our solution can influence policy changes and funding priorities. This can lead to increased investment in genomic technologies and greater support for integrating these tools into standard cancer care protocols, ultimately making genomic testing more accessible and affordable for all patients.
In summary, our innovative approach not only addresses the immediate needs of rare cancer patients but also has the potential to drive significant positive changes in the broader healthcare landscape. By setting a new standard for integrating genomic sequencing with existing treatment pathways, we aim to catalyze a shift towards more personalized and effective cancer care.
Why are you applying to the Prize?
We are applying to The Amgen Prize because we are seeking funding and partnership from a source that is synonymous with innovation and understands the needs of rare cancer patients. We are inspired by Amgen's commitment to rare disease, Amgen’s track record and commitment to innovation, and the specific focus and structure of the Amgen Prize.
The Prize also presents a significant opportunity to overcome financial, technical, legal, and market barriers faced by this solution in order to achieve the transformative change we seek. The financial barriers include the costs associated with providing free genomic sequencing for rare cancer patients whose health insurance will not cover the testing, or individuals who are uninsured or underinsured. The financial support from the Amgen Prize will be used to cover these costs and kickstart a fund, inviting others to join us in order to fund this work into the future.
The technical infrastructure to support this solution is largely built, thanks to Pattern.org’s infrastructure but the Amgen Prize would help us build inroads from other systems such as hospital systems and support our ability to recruit patients. The Amgen Prize would catalyze our partnership development and support streamlining the process for patients around the country. Support from The Amgen Prize would facilitate these collaborations, ensuring that we can leverage the best available technologies and methodologies, and we would welcome connections and partnership from the Amgen Prize community.
While we are confident in the legal and regulatory structure of our solution, being awarded the Amgen Prize would support the Rare Cancer Research Foundation’s advocacy work to give patients more control over their own tissue and data. We believe that patients should have more control and ownership over their own tissue and data. Being awarded the Amgen Prize would more broadly recognize RCRF as a leader in this area, and enable us to address the legal, regulatory, and cultural hurdles in blocking patients from participating in research and give them more ownership over how their data and tissue is used.
And lastly, being awarded the Amgen Prize would support our work breaking through the market barriers to connect patients to genomic sequencing. Raising awareness about the benefits of genomic testing and encouraging adoption among rare cancer patients and healthcare providers is challenging. The recognition and credibility provided by The Amgen Prize can significantly boost our visibility and help us gain the trust and support of the medical community and patients. Overcoming market barriers to make genomic testing a standard part of rare cancer care requires broad advocacy and systemic change. The platform and support from The Amgen Prize can amplify our efforts to advocate for policy changes and increased investment in genomic technologies.
By addressing these barriers with the help of The Amgen Prize, we aim to transform the diagnostic and treatment landscape for rare cancer patients, ensuring they have access to the advanced diagnostic tools and personalized treatments they deserve.
Who is the Team Lead for your solution?
Marshall Thompson, PhD
How are you and your team well-positioned to deliver this solution?
Our team at the Rare Cancer Research Foundation (RCRF) is uniquely positioned to deliver this solution due to our deep connections and commitment to the rare cancer community. Since our founding in 2013, we have earned the trust of the rare cancer patient community through our steadfast commitment to patient-centric values, and our deep connections with over 300 patient advocacy foundation partners. As an umbrella organization building shared infrastructure across the rare cancer community, in partnership with patient advocacy foundations, we are well-positioned to deliver this solution.
The RCRF team itself is uniquely well-positioned to lead this effort. Our team is not only composed of professionals with extensive experience in cancer research and patient advocacy, but many of us have personal experiences with rare cancers, either as patients, caregivers, or through close relationships with those affected. Our Team Lead, Marshall Thompson PhD, has extensive professional expertise in cancer research, innovation, genetics, and software development. Beyond his academic and research credentials, he has personally supported friends and loved ones through their complex cancer journeys. This firsthand experience has deeply influenced his values and commitment to the rare cancer community. His unique combination of scientific insight and personal dedication ensures our approach is both cutting-edge and compassionate, bridging the gap between advanced research and patient-centered care. His leadership drives our mission to deliver impactful, empathetic solutions for rare cancer patients.
The RCRF team includes individuals who have been involved in various capacities within the rare cancer ecosystem, from patient advocacy to nonprofit strategic planning. Our team's professional backgrounds are complemented by a strong network of relationships with patients, caregivers, researchers, and clinicians, all of whom provide invaluable insights and guidance.
Our solution's design and implementation are heavily guided by the input and feedback from the rare cancer community. We regularly engage with patient advocacy groups, attend meetings and conferences, and conduct surveys to understand the needs, preferences, and challenges of rare cancer patients. This continuous dialogue ensures that our solution is not only addressing the most pressing issues but is also adaptable and responsive to the evolving needs of the community. Moreover, we established a formal advisory board who play a critical role in shaping our initiatives. This board provides direct input on program design, outreach strategies, and implementation plans, ensuring that our solutions are grounded in the lived experiences of those we aim to serve.
In summary, our team's proximity to the rare cancer community, combined with our professional expertise and extensive network of relationships, positions us well to deliver this innovative solution. Our patient-centric approach, guided by continuous community input and collaboration, ensures that we are effectively addressing the unique challenges faced by rare cancer patients and providing them with the best possible support and resources.
What type of organization is your solution team?
Nonprofit
What are your impact goals for the next year and the next five years, and how will you measure and achieve them?
Within the first year of this solution, our primary impact goal is to ensure access to genomic sequencing for 100% of rare cancer patients that donate tissue using Pattern.org, and to measure our impact in the number of rare cancer patients who receive genomic sequencing reports who would not have otherwise. We will measure our progress by tracking the number of patients enrolled and who receive genomic sequencing through Pattern.org and which institutions at which they are being seen. We will also measure, through patient feedback, the number of individuals for whom receiving a genomic sequencing report led to an actionable change for their diagnostic and treatment journey. To achieve this, we plan to send follow-up surveys to all patient participants in this program.
Expanding awareness and education on the importance of genomic sequencing is another critical goal. We aim to reach 5,000 individuals with educational materials and resources about the benefits of genomic sequencing for rare cancers. We will track the distribution and engagement metrics of educational content across various platforms. To achieve this, we will develop and disseminate educational content through webinars, social media, patient forums, and partnerships with patient advocacy foundations, as well as host virtual Q&A sessions and workshops to directly engage with the rare cancer community and address their concerns.
Looking ahead to the next five years, our goal is to provide genomic sequencing to 5,000 rare cancer patients. We will measure our progress by maintaining a cumulative count of patients who have received genomic sequencing each year. To achieve this, we will scale up partnerships with hospitals, clinics, and foundation partners to reach a wider patient base, and secure additional funding and resources to support the increased volume of genomic sequencing.
We also aim to contribute to rare cancer research and treatment development by generating a comprehensive database of genomic data from rare cancer patients. We will measure our progress by monitoring the number of research studies and clinical trials utilizing our genomic data. To achieve this, we will share de-identified genomic data, and facilitate collaborations and data-sharing agreements that advance rare cancer research and the development of targeted therapies.
Indicators for Measuring Progress:
Our indicators for measuring progress include the number of patients enrolled and who received genomic sequencing reports, reach and engagement metrics for educational campaigns, and the number of research projects and clinical trials leveraging our genomic data.
By setting these ambitious yet achievable impact goals, we aim to transform the lives of rare cancer patients through enhanced diagnostic capabilities, better treatment options, and meaningful contributions to the scientific community.
Describe in simple terms how and why you expect your solution to have an impact on the problem.
Our solution aims to revolutionize the diagnosis and treatment of rare cancers by providing widespread access to genomic sequencing. This theory of change outlines how our solution will produce immediate outputs and lead to longer-term outcomes that significantly impact rare cancer patients’ lives.
Activities:
Providing Free Genomic Sequencing: We will offer free genomic sequencing to rare cancer patients through our platform, Pattern.org.
Outreach and Education: We will conduct outreach campaigns to raise awareness about the importance and availability of genomic sequencing, targeting rare cancer patient advocacy foundations, healthcare providers, and other partners.
Data Sharing and Research Collaboration: We will share de-identified genomic data to a data commons, promoting innovation in rare cancer research.
Immediate Outputs:
Increased Access to Genomic Sequencing: By providing free sequencing, we expect a significant increase in the number of rare cancer patients who gain access to genomic testing.
Awareness and Education Impact: Our outreach efforts will result in greater awareness and understanding of the importance of genomic sequencing among patients and healthcare providers.
Comprehensive Patient Reports: Patients will receive detailed genomic sequencing reports, including actionable findings such as potential targeted therapies or clinical trials.
Longer-term Outcomes:
Improved Diagnostic Accuracy and Speed: Increased access to genomic sequencing will lead to more timely and accurate diagnoses, reducing the average time it takes for rare cancer patients to receive an accurate diagnosis.
Better Treatment Options: With detailed genomic information, patients and their healthcare providers can identify more effective, personalized treatment options, including targeted therapies and clinical trials. Numerous studies have demonstrated the efficacy of genomic sequencing in identifying actionable mutations and improving treatment outcomes for cancer patients.
Enhanced Quality of Life and Survival Rates: By receiving accurate diagnoses and effective treatments sooner, patients will experience better health outcomes, including improved quality of life and increased survival rates.
Advancements in Rare Cancer Research: The genomic data collected and shared with research partners will contribute to a deeper understanding of rare cancers, facilitating the development of new treatments and potentially leading to breakthroughs in rare cancer care.
By linking our activities to these immediate outputs and longer-term outcomes, our solution aims to address critical gaps in the rare cancer diagnostic and treatment process. The evidence supporting these links further strengthens our belief that providing widespread access to genomic sequencing will significantly improve the lives of rare cancer patients.
Which of the following categories best describes your solution?
A new business model or process that relies on innovation or technology to be successful
Please select the technologies currently used in your solution, if any:
If your solution has a website or an app, provide the links here:
Pattern.org
How many people work on your solution team?
The Rare Cancer Research Foundation has 9 full-time staff members and 7 contractors.
How long have you been working on your solution?
Since its founding in 2013, the Rare Cancer Research Foundation has been dedicated to building infrastructure to support rare cancer research. We have been working on this solution, a genomic sequencing program built on the Pattern.org platform, since 2023.
Tell us about how you ensure that your team is diverse, minimizes barriers to opportunity for staff, and provides a welcoming and inclusive environment for all team members.
At the Rare Cancer Research Foundation (RCRF), we are deeply committed to fostering a diverse, equitable, and inclusive environment for all team members. This commitment is rooted in our core values, which emphasize the importance of diversity in rare cancer research as essential to our mission of curing rare cancers and advancing effective research.
Values for Diversity, Equity, and Inclusion (DEI):
We strive to enhance our DEI efforts continuously, guided by clear goals. These include increasing representation of marginalized groups within our organization, cultivating an inclusive culture where all members feel valued and supported, and ensuring equitable access to opportunities for professional growth and advancement. Our Founder, as a member of the gay community and social justice advocate, ensured our internal culture and external work in the world promote diversity, equity, inclusion, and belonging since our beginning. We prominently display our commitment to DEI in our job descriptions and are working to attract and retain a diverse team.
Proximity to the Communities We Serve:
Our commitment to DEI is closely aligned with our mission to serve the rare cancer patient community, particularly those from historically underserved and underrepresented groups. Many of our team members have personal experiences with rare cancers, either as patients, caregivers, or through close relationships. This proximity ensures that our work is deeply informed by the needs and challenges of the communities we serve.
Guided by Community Input:
The design and implementation of our solutions are meaningfully guided by the input, ideas, and agendas of the rare cancer community. We regularly engage with patient advocacy groups, conduct surveys, and hold focus groups to gather feedback and insights. This continuous dialogue ensures that our initiatives are responsive to the evolving needs of rare cancer patients, with particular emphasis on those from minoritized communities.
Commitment to Equity and Access:
Our DEI commitment is also reflected in our flagship initiative, Pattern.org, which promotes equitable access to genomic sequencing for rare cancer patients. By removing geographic and financial barriers, we enable patients from any hospital, anywhere in the country, to access cutting-edge diagnostic tools at little to no cost. This model is designed to improve outcomes for all patients, with a particular focus on those from marginalized communities.
In conclusion, at the Rare Cancer Research Foundation, our core values of diversity, equity, and inclusion drive everything we do. We are dedicated to creating a supportive and inclusive environment that values diverse perspectives, actively works to eliminate barriers, and ensures equitable access to opportunities for all team members. This commitment is integral to achieving our mission and driving innovation in rare cancer research.
What is your business model?
The Rare Cancer Research Foundation (RCRF) operates on a robust business model that delivers substantial value to the rare cancer community. This model integrates philanthropy, grants, and revenue from our innovative tissue donation platform, Pattern.org, ensuring sustainable support for our key beneficiaries: rare cancer patients, their families, and the research community.
Our primary value proposition for rare cancer patients is currently the fact that they want to donate their live tissue to increase knowledge of their disease and to hopefully help others in the future. While their altruism has supported Pattern.org since its inception, this genomic sequencing program provides an unprecedented opportunity to provide real value back to patients on a time scale that could help inform their care and improve their outcomes.
For researchers, Pattern.org offers access to high-quality live tissue samples donated by rare cancer patients. This resource is vital for advancing research and developing new treatments for rare cancers. Researchers pay for access to these samples, generating revenue that we reinvest into our programs, thereby supporting our mission to advance rare cancer research.
Currently, philanthropy is a cornerstone of our business model. Individual donations and philanthropic contributions are crucial for funding our operations and expanding our services. This financial support ensures that we can continue to provide valuable resources and support to the rare cancer community. In addition to philanthropic contributions, we actively seek grants from foundations, government programs, and other funding bodies that support cancer research and patient care. These grants are instrumental in sustaining and scaling our programs, enabling us to reach more patients and contribute more significantly to rare cancer research.
Our delivery of products and services is streamlined and efficient. The tissue donation platform connects patients willing to donate tissue samples with researchers who need them, ensuring ethical and efficient handling of donations that benefit both donors and the scientific community.
Looking ahead, while we are currently supported by philanthropy, we intend to become earned-income sustainable within the next 5-10 years. This will be achieved through a combination of revenue from live tissue donations and usage licenses for our upcoming Pattern Data Commons initiative. By developing these income streams, we will ensure the long-term sustainability of our programs and continue to provide high-impact solutions to our key beneficiaries, driving advancements in rare cancer diagnosis, treatment, and research.
Do you primarily provide products or services directly to individuals, to other organizations, or to the government?
Individual consumers or stakeholders (B2C) (e.g. patients or caregivers)What is your plan for becoming financially sustainable, and what evidence can you provide that this plan has been successful so far?
The Rare Cancer Research Foundation (RCRF) has developed a comprehensive plan to achieve financial sustainability, leveraging a combination of philanthropic support, grants, and revenue-generating activities and eventually becoming earned-income sustainable within 5 to 10 years. This diversified approach ensures that we can continue to provide valuable resources and support to the rare cancer community while expanding our impact.
Current Funding Sources:
Our financial sustainability plan begins with the generous funding we have received from esteemed organizations. Notably, we have secured significant funding from the Chan Zuckerberg Initiative, which has been instrumental in supporting our innovative programs. Additionally, we are proud to be a subgrantee on a Department of Defense grant, further validating our efforts and enhancing our capacity to advance rare cancer research. We have also received substantial support from the Robertson Foundation, which has played a crucial role in bolstering our initiatives. Philanthropy remains a cornerstone of our financial strategy. We actively cultivate relationships with individual donors and philanthropic organizations, emphasizing the critical impact of their contributions on our mission. In addition to ongoing fundraising efforts, we continuously seek grants from foundations, government programs, and other funding bodies that align with our objectives. These grants have been essential in sustaining and scaling our programs.
Revenue-Generating Activities:
Looking ahead, we aim to transition towards earned income sustainability within the next 5-10 years. Our primary revenue-generating activities will focus on our Pattern.org platform, which facilitates live tissue donations for research purposes, as well as our upcoming Pattern Data Commons. We plan to create a revenue stream through usage licenses as we accumulate valuable genomic and clinical data from rare cancer patients. We plan to offer access to this data to researchers and pharmaceutical companies, providing another reliable revenue stream and supporting our long-term sustainability.
Evidence of Success:
Our financial sustainability plan has already demonstrated success through the substantial funding we have secured. The Chan Zuckerberg Initiative's support, the Robertson Foundation's contributions, and our role as a subgrantee on a Department of Defense grant are significant milestones that underscore our credibility and the impact of our work. These funds have allowed us to enhance our infrastructure, expand our programs, and reach more rare cancer patients and researchers.
Furthermore, our Pattern.org platform has begun generating revenue through tissue donations, illustrating the viability of our revenue-generating activities.
Long-Term Sustainability:
Our long-term plan is to ensure that our revenue streams cover our expected expenses, enabling us to maintain and expand our impact without relying solely on philanthropic donations. By diversifying our funding sources and establishing sustainable revenue-generating activities, we are building a robust financial foundation that will support our mission for years to come.
In summary, the Rare Cancer Research Foundation's financial sustainability plan is anchored in a strategic mix of philanthropy, grants, and revenue-generating activities. As we continue to expand our revenue streams through tissue donations and data commons usage licenses, we are confident in our ability to achieve long-term financial sustainability and continue advancing rare cancer research.
Solution Team
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What is the name of your organization?
Rare Cancer Research Foundation