structure
19 nested activity groups
Rare Genetic Disease Research and Advocacy
HIV/AIDS Prevention and Support Services
Cancer Awareness and Education Initiatives
Disease-Specific Clinical & Patient Education
Cancer Peer Support & Wellness Programs
Patient and Researcher Conferences
Familial Support for Rare Genetic Conditions
Community Recovery Awareness Events
Living Donor Transplant Support
Parkinson's Disease Research and Support
Kidney Disease Education and Advocacy
Autism Awareness and Acceptance Initiatives
Bleeding and Blood Disorder Support Services
Neurological Disability Support & Advocacy
Pancreatic Cancer Research and Support
Cardiovascular Disease Research and Support
Alzheimer's Research and Support Services
Inflammatory Bowel Disease Research and Support
Liver Disease Research and Support
organizations
Organizations in this activity group · 764
showing 20 of 50
| # | Organization | State | Revenue | Activities ↓ | |
|---|---|---|---|---|---|
| 1 | NATIONAL KIDNEY FOUNDATION INC The provided content is a fact sheet on kidney disease in the United States, citing statistics from the CDC, NIH, and other health organizations. It covers pre… | NY | $50.1M | 10 | |
| 2 | NEW YORK CENTER FOR KIDNEY TRANSPLANTATION INC Consortium of kidney transplant centers, organ procurement organizations, and patient advocacy groups in New York State focused on education, advocacy, and col… | NY | $161K | 10 | |
| 3 | ZTTK SON-SHINE FOUNDATION ZTTK SON-SHINE FOUNDATION supports individuals with ZTTK syndrome, a rare genetic disorder. The organization funds research initiatives, including drug repurpo… | NY | $524K | 10 | |
| 4 | KIF1AORG INC KIF1AORG INC is a global nonprofit dedicated to improving the lives of individuals affected by KIF1A-associated neurological disorder (KAND) and accelerating r… | NY | $295K | 9 | |
| 5 | THE BARTH SYNDROME FOUNDATION The Barth Syndrome Foundation promotes awareness, supports research, and advocates for patients and families affected by Barth syndrome, a rare genetic disorde… | NY | $1.9M | 9 | |
| 6 | THE MARFAN FOUNDATION INC The Marfan Foundation provides education, support, and resources for individuals and families affected by Marfan syndrome, Loeys-Dietz syndrome, vascular Ehler… | NY | $7.8M | 8 | |
| 7 | HEALTHY PARKINSONS COMMUNITIES OF THE GREATER CAPITAL REGION INC Website provides educational resources about Parkinson's disease, including symptoms, treatment options, and support for patients and care partners. Content co… | NY | $87K | 7 | |
| 8 | KIDNEY FOUNDATION OF WNY INC Provides education and community awareness about kidney disease and treatment options, including dialysis and transplantation. Focuses on supporting individual… | NY | $177K | 7 | |
| 9 | PRIMARY BILIARY CHOLANGITIS ORGANIZATION Primary Biliary Cholangitis Organization is a nonprofit based in Rochester, NY, dedicated to education and support for individuals affected by primary biliary … | NY | $66K | 7 | |
| 10 | RIAAN RESEARCH INITIATIVE INC Riaan Research Initiative is a nonprofit organization dedicated to advancing treatments for Cockayne Syndrome, a rare and fatal genetic disorder. The organizat… | NY | $616K | 7 | |
| 11 | Tatton Brown Rahman Syndrome Community Inc The Tatton Brown Rahman Syndrome (TBRS) Community supports families affected by the rare genetic disorder TBRS and advances research toward effective intervent… | NY | $309K | 7 | |
| 12 | YELLOW BRICK ROAD PROJECT INC Nonprofit organization led by parents of patients, dedicated to advancing research, raising awareness, and connecting families affected by HNRNPH2 mutations. T… | NY | $2K | 7 | |
| 13 | AID FOR AIDS INTERNATIONAL INC AID FOR AIDS INTERNATIONAL is a nonprofit organization founded in New York that improves the quality of life of people living with HIV/AIDS, particularly in La… | NY | $6.9M | 6 | |
| 14 | BREAST CANCER OPTIONS INC The website content describes a commercial entity, The Harmony Company, and its product offerings of dietary supplements and health products, including discoun… | NY | $81K | 6 | |
| 15 | Cri Du Chat Research Foundation Inc The Cri Du Chat Research Foundation Inc is a nonprofit organization dedicated to advancing research and support for individuals affected by Cri du Chat Syndrom… | NY | $135K | 6 | |
| 16 | DIASPORA COMMUNITY SERVICES INC Diaspora Community Services Inc (DCS) is a Brooklyn-based nonprofit that empowers low-income individuals, immigrants, and youth through culturally sensitive he… | NY | $9.9M | 6 | |
| 17 | G6PD DEFICIENCY FOUNDATION The G6PD Deficiency Foundation is a nonprofit organization dedicated to providing educational resources and support for individuals with G6PD deficiency, their… | NY | $7K | 6 | |
| 18 | HUNTERS CMT4B3 RESEARCH FOUNDATION INC HUNTERS CMT4B3 RESEARCH FOUNDATION INC is a nonprofit dedicated to funding scientific research for Charcot-Marie-Tooth Disease Type 4B3 (CMT4B3), an ultra-rare… | NY | $609K | 6 | |
| 19 | HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC Nonprofit dedicated to improving the lives of people with Huntington's disease and their families. Provides educational resources, care guidance, and support s… | NY | $10.2M | 6 | |
| 20 | LETS WIN PANCREATIC CANCER FOUNDATION Let's Win Pancreatic Cancer Foundation is a nonprofit that provides science-based, medically vetted information to patients and caregivers navigating pancreati… | NY | $1.7M | 6 |
approaches
Strategies used in this activity group
Approaches extracted from orgs working in this activity group and the groups nested inside it.
- Venture Philanthropy Model 108 orgsBy applying venture philanthropy principles to fund high-risk, high-reward research, we accelerate breakthrough therapies, because strategic, flexible investment can de-risk early-stage science and attract further capital. This strategy involves treating philanthropic funding like venture capital—targeting innovative, early-stage research with high transformative potential, often in environments where traditional funders hesitate to invest. It distinguishes itself from conventional grantmaking by emphasizing financial discipline, reinvestment of returns, and active management akin to venture capital, as seen in both EB Research Partnership and the Alzheimer’s Drug Discovery Foundation.ADVANCIUM HEALTH NETWORK INCHyper IgM Foundation IncMICHAEL'S CAUSE INCTHE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
- Integrated, Culturally Affirming Care 38 orgsBy integrating medical, behavioral, and social services within culturally affirming and community-rooted models, we improve health and social outcomes because trust, accessibility, and holistic support are essential for engagement among marginalized populations. This strategy combines structural integration of services—such as co-locating care and coordinating interdisciplinary teams—with deep cultural attunement, including language access, trauma-informed practices, and alignment with community values. What distinguishes it from narrower models is its dual emphasis on system-level coordination and cultural legitimacy, ensuring that care is not only accessible but also trusted and relevant to the lived experiences of the populations served. It emerges consistently across organizations working with vulnerable elders, refugees, and urban underserved communities, reflecting a shared theory that integration without cultural affirmation fails to reach those most in need.INTERFAITH MEDICAL CENTER INCNEW YORK CENTER FOR LIVER TRANSPLANTATION INCPRIMARY BILIARY CHOLANGITIS ORGANIZATIONVOCES LATINAS CORPORATION
- Story-Based Engagement 38 orgsBy sharing personal narratives and lived experiences, organizations drive awareness, empathy, and action, because stories foster emotional connection and motivate engagement more effectively than data alone. This strategy leverages authentic storytelling—whether from patients, families, or medical professionals—to humanize complex health issues, build public trust, and inspire participation in advocacy, donation, or treatment adherence. While several organizations use education, peer support, or systemic collaboration as primary levers, this cluster is distinct in its reliance on narrative as the core mechanism for change, differentiating it from evidence-driven or infrastructure-focused approaches.BRAVE LITTLE WARRIORS INCORPORATEDCENTRAL NEW YORK LYME AND TICK-BORNE DISEASE ALLIANCE INCNEW YORK CENTER FOR KIDNEY TRANSPLANTATION INCPISSED ORGANIZATION INC 3809 WILSON AVENUE
- Patient-Centered Education and Empowerment 35 orgsBy providing accessible, expert-guided education and fostering lived-experience networks, patients become more informed and activated in their care, because knowledge, emotional support, and self-advocacy skills increase engagement, adherence, and health literacy. This strategy centers on equipping patients with credible information, peer support, and tools for self-advocacy to improve health outcomes. It distinguishes itself from purely clinical or provider-focused models by treating patient agency as a primary driver of change, integrating emotional resilience, health literacy, and systemic navigation. Unlike top-down education efforts, it emphasizes bidirectional learning, incorporating patient voices into program design and policy advocacy.KIDNEY SEARCH FOUNDATION INCNEW YORK CENTER FOR LIVER TRANSPLANTATION INCOURBRAINBANK INCTHE MARFAN FOUNDATION INC
- Research-Advocacy Integration 33 orgsBy aligning patient education, community mobilization, and stakeholder collaboration with targeted research initiatives, accelerate therapeutic development and improve patient outcomes, because integrated ecosystems of knowledge, funding, and lived experience reduce duplication, prioritize patient-centered science, and sustain momentum in rare disease research. This strategy combines awareness, education, and grassroots engagement with direct research funding and infrastructure—such as biorepositories, patient registries, and collaborative science platforms—to create a self-reinforcing cycle where informed communities drive research relevance and urgency. Unlike standalone education or research funding efforts, this approach ensures that scientific progress is continuously informed by patient needs and real-world data, while advocacy gains credibility through scientific rigor. It is distinct in its bidirectional flow between community and lab, making it a cornerstone strategy across rKCNMA1 CHANNELOPATHY INTERNATIONAL ADVOCACY FOUNDATIONMICHAEL'S CAUSE INCPEDIATRIC NEUROTRANSMITTER DISEASE ASSOCIATION INCTHE KAT6 FOUNDATION INC
- Education-for-Early-Detection 27 orgsBy increasing public and patient knowledge of symptoms, risk factors, and preventive behaviors, organizations improve early detection and health outcomes, because informed individuals are more likely to seek timely medical care and engage in prevention. This strategy centers on using education as a primary lever to shift health behaviors upstream, particularly around recognizing warning signs and accessing screening. It is distinct from purely clinical or research-focused approaches, as it targets individual agency and decision-making through accessible information, often tailored to high-risk or underserved populations. While some organizations emphasize school-based delivery or behavioral heuristics, others focus on peer-led or digital dissemination—unified by the belief that awareness precedes action.BABYLON BREAST CANCER COALITION INCCENTRAL NEW YORK LYME AND TICK-BORNE DISEASE ALLIANCE INCGRACE'S GYNECOLOGIC CANCER SUPPORT INCTHE MAURER FOUNDATION FOR BREAST HEALTH EDUCATION INC
- Holistic Integration Model 26 orgsBy integrating medical, psychological, social, and spiritual supports within a unified, person-centered framework, organizations improve recovery outcomes, because addressing the full spectrum of an individual’s needs leads to more sustainable engagement and resilience than isolated interventions. This strategy centers on treating individuals as whole persons rather than focusing on discrete symptoms or diagnoses. It distinguishes itself from narrower clinical models by intentionally weaving together behavioral health, social services, family systems, peer support, and trauma-informed practices into a coordinated continuum of care. Unlike single-modality approaches, the Holistic Integration Model assumes that lasting recovery emerges from aligning multiple domains of well-being—biological, emotional, relational, and systemic—within a culturally responsive and client-driven process.BRIDGING ACCESS TO CARE INCJOHN BROWER JR FOUNDATION INCLONG ISLAND COUNCIL ON ALCOHOLISM & DRUG DEPENDENCE INCROCHESTER GENERAL HEALTH SYSTEM WORKERS' COMPENSATION TRUST
- Peer-Led Support 25 orgsBy integrating staff with lived experience into care delivery, we produce stronger engagement and better recovery outcomes, because shared experience builds trust, reduces stigma, and models achievable recovery pathways. This strategy centers peer-led support as a core mechanism for building trust and fostering authentic connections in mental health and addiction recovery. It distinguishes itself from purely clinical models by prioritizing relational credibility and experiential mentorship, making services more accessible and relatable. While other strategies focus on housing, clinical integration, or outreach, this approach consistently leverages lived experience across organizations as the active ingredient in engagement and sustained recovery.LONG ISLAND COUNCIL ON ALCOHOLISM & DRUG DEPENDENCE INCON POINT NYC INCTHE 21 CLUB OF CNY INCUNITED SERVICES HOUSING DEVELOPMENT FUND CORPORATION
- Peer-Led Holistic Support 18 orgsBy integrating peer-led support, education, and comprehensive services, organizations improve health outcomes and quality of life, because shared lived experience builds trust, reduces isolation, and enables more effective engagement with care than clinical interventions alone. This strategy combines peer-driven connection with multidimensional support—spanning emotional, educational, and clinical domains—to address both psychosocial and medical needs in chronic or stigmatized health conditions. What distinguishes it from narrower peer-support models is its intentional integration of lived experience into a broader system of care, advocacy, and innovation, creating a feedback loop where patients co-lead and co-shape services. Unlike standalone education or clinical programs, this approach treats peer insight as foundational to both individual resilience and systemic effectiveness.Brain Injury Association of New York State IncNEW YORK CITY HEMOPHILIA CHAPTER INCTHE MARFAN FOUNDATION INCXLH NETWORK INC
- Patient-Centered Research Acceleration 16 orgsBy integrating patients and families as active partners in research design, governance, and data collection, we accelerate the development of meaningful therapies, because lived experience ensures scientific priorities align with real-world needs, improves study relevance, and increases participation and trust. This strategy places patients not just as subjects but as co-creators of research, leveraging their insights to shape everything from research questions to trial design and resource allocation. Unlike traditional models that treat patient engagement as outreach or recruitment, this approach embeds patient perspectives into the scientific process itself, increasing the speed and relevance of therapeutic development—particularly critical in rare and genetic diseases where data is scarce and misaligned incentives can stall progress. It distinguishes itself from broader collaboration models by centering identity-driven expertise (patients/families) rather than institutional or discPRIMARY BILIARY CHOLANGITIS ORGANIZATIONProject CASK IncTHE KAT6 FOUNDATION INCTHE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
- Direct Financial Relief 15 orgsBy providing direct financial assistance to individuals facing serious illness, we reduce economic barriers to care and improve health outcomes, because financial stability is foundational to treatment adherence, mental well-being, and family resilience during medical crises. This strategy centers on addressing the social determinants of health—particularly financial toxicity—by transferring resources directly to patients and families to cover medical and non-medical costs. What distinguishes it from other models is its focus on immediate, unrestricted economic support rather than services or systemic advocacy, with the shared belief that alleviating financial stress is a prerequisite to effective treatment and recovery. While some organizations layer this with research funding or volunteer-driven operations, the core mechanism across all is the removal of financial barriers as a direct lever for improving health outcomes.BRAVE LITTLE WARRIORS INCORPORATEDCancer Resource Center of the Finger LakesSEVA HEART FOUNDATION INCTHE PINK AGENDA INC
- Patient-Centered Integration 15 orgsBy integrating care across disciplines and centering patient agency, preferences, and lived experience, organizations produce improved health outcomes and engagement, because holistic, coordinated, and personalized approaches address the full spectrum of medical, emotional, and social needs while fostering trust and adherence. This strategy unifies models that combine structural integration of services—such as co-located care, multidisciplinary teams, and home-based delivery—with a deep commitment to patient partnership, shared decision-making, and individualized planning. What distinguishes it from narrower operational models is its dual focus on system-level coordination and patient-level empowerment, treating both clinical integration and personal agency as essential to effective care. Unlike purely logistical or educational approaches, this strategy assumes that sustainable health improvement arises from aligning clinical expertise with the patient’s values, environment, and lifeCANCER SUPPORT TEAM INCEDWARD J NOBLE HOSPITAL - SAMARITANONEIDA HEALTH ROSWELL PARK ONCOLOGY LLCROCHESTER GENERAL HEALTH SYSTEM WORKERS' COMPENSATION TRUST
- Community-Led Systems Change 14 orgsBy centering community leadership, lived experience, and collective agency in design and decision-making, we produce sustainable and equitable social change because solutions rooted in local knowledge and power are more legitimate, adaptive, and effective at transforming systems. This strategy unifies a diverse set of organizations around a shared theory of change: lasting impact emerges not from top-down interventions, but from shifting power, resources, and authority to the communities most affected by injustice. It distinguishes itself from service-delivery or expert-driven models by prioritizing local ownership, relational trust, and systemic transformation—whether through survivor-led advocacy, faith-based collaboration, interdisciplinary co-creation, or intergenerational movement building. While operational expressions vary (e.g., legal advocacy, care infrastructure, or educational access), the core mechanism is consistent: empowering frontline voices as the primary agents of chLADY MITZ FOUNDATIONSPINA BIFIDA ASSOCIATION OF NEW YORK STATEVOICES OF COMMUNITY ACTIVISTS & LEADERS (VOCAL-NY) INCWESTERN NEW YORK UNITED AGAINST DRUG ALCOHOL ABUSE FOUNDATION INC
- Holistic Support Integration 14 orgsBy coordinating medical, emotional, financial, and practical support services, we improve cancer patient resilience and treatment outcomes, because addressing interconnected needs reduces systemic barriers and enhances overall well-being. This strategy centers on treating cancer care as a multidimensional experience by integrating non-medical support services—such as counseling, financial aid, peer mentoring, and practical assistance—into a unified system of care. Unlike narrow, single-domain interventions, this approach operates on the belief that stabilizing one aspect of a patient’s life (e.g., housing or mental health) positively impacts other domains, including treatment adherence and quality of life. It is distinguished by its emphasis on coordinated, person-centered ecosystems of care rather than isolated services.CANCER SUPPORT TEAM INCFIGHTING CHANCE INCNew York Cancer Center IncPLUTA CANCER CENTER FOUNDATION INC
- Client-Choice Model 12 orgsBy providing nonjudgmental, client-centered counseling and removing structural barriers, individuals make informed, autonomous pregnancy decisions, because people are more likely to engage and persist in care when they feel respected, heard, and supported without coercion. This strategy centers on preserving client autonomy through emotionally safe, values-aligned, and often faith-based support while offering tangible resources and medically accurate information. It distinguishes itself from directive models by explicitly rejecting persuasion or financial incentives toward specific outcomes, instead emphasizing trust, dignity, and informed choice as the pathway to life-affirming decisions. The integration of peer support, trauma-informed care, and barrier reduction reinforces sustained engagement without compromising neutrality.CARE NET PREGNANCY CENTER OF CENTRAL NEW YORK INCFAMILY RESOURCE CENTER OF OSWEGO COUNTY INCPRAXIS HOUSING INITIATIVES INCROCKLAND PREGNANCY COUNSELING CENTER INC
- Integrated Care Coordination 12 orgsBy coordinating mental health, substance use, primary care, and social services across providers and community resources, the organization improves client stability and independence, because integrated support addresses the interconnected drivers of vulnerability and reduces systemic fragmentation. This strategy centers on breaking down silos between health, behavioral health, and social services by creating unified, client-centered systems of care. Unlike standalone clinical interventions or single-issue programs, it emphasizes cross-sector collaboration and holistic service delivery to address complex, overlapping needs—particularly for individuals experiencing homelessness, mental illness, or substance use disorders. What distinguishes it is its systemic focus: not just offering multiple services, but ensuring they are synchronized, accessible, and sustained over time.ANTHONY L JORDAN HEALTH CORPORATIONSPINA BIFIDA ASSOCIATION OF NEW YORK STATESpina Bifida of Western New York IncTHE CHILDREN'S HEARING INSTITUTE INC
- Integrated Research-Clinical Model 12 orgsBy embedding research within clinical care and training environments, we accelerate medical innovation and improve patient outcomes, because continuous feedback between discovery and practice enables rapid translation and real-world validation of new knowledge. This strategy unifies scientific inquiry, clinical delivery, and education into a single, iterative system where discoveries are rapidly implemented and refined based on patient data and frontline experience. Unlike standalone research or clinical models, it depends on structural integration—shared teams, infrastructure, and leadership—across science and practice to close the loop between bench and bedside. It is distinct from siloed approaches by treating clinical settings as living laboratories for innovation, ensuring that advances in medicine are both evidence-driven and immediately actionable.CUREPSP INCPAGNY HEALTH AND RESEARCH FOUNDATION INCPIETROS FIGHT INCWESTERN NEW YORK BLOODCARE INC
- Community-Led Affirmation 11 orgsBy centering community-driven design, lived experience, and peer-led processes in service delivery and resource development, we improve engagement and well-being for LGBTQ+ individuals, because trust, safety, and cultural resonance are best achieved when marginalized communities lead and shape the support systems meant for them. This strategy unifies approaches that prioritize authentic participation and leadership from LGBTQ+ individuals—especially those with intersecting marginalized identities—in creating and validating care models, platforms, and educational experiences. It goes beyond inclusion to place decision-making power in the hands of the community, ensuring relevance, safety, and sustainability. What distinguishes it from top-down or expert-driven models is its foundational belief that effective support must emerge from within the community to be truly affirming and effective.AUTISTIC ADULTS NYC INCDESTINATION TOMORROW INCIM FROM DRIFTWOODROCKLAND COUNTY PRIDE CENTER INC
- Awareness and Community Integration 10 orgsBy increasing public awareness and building inclusive community networks, we foster belonging and reduce stigma for individuals with autism, because visibility and relational connection shift societal attitudes and enable systemic inclusion. This strategy centers on changing social norms and expanding support ecosystems through dual pathways: public education to combat misinformation and structured community engagement to create safe, accessible spaces for participation. Unlike standalone awareness campaigns or direct service models, this approach integrates cultural change with relational infrastructure—linking individual empowerment to broader acceptance via peer networks, storytelling, events, and co-created programs. It distinguishes itself from purely clinical or family-only support models by emphasizing collective responsibility and societal-level transformation as prerequisites for individual well-being.AUTISTIC ADULTS NYC INCCHIP INTERNATIONAL INCEJ AUTISM FOUNDATIONTHE MELILLO FOUNDATION
- Psychosocial Resilience Through Symbolic Acts 10 orgsBy delivering symbolic, emotionally resonant interventions such as wish fulfillment, holiday gifts, wigs, or therapeutic play, organizations produce psychological well-being and social integration, because these acts restore agency, dignity, and a sense of normalcy during traumatic medical experiences. This strategy centers on using meaningful, non-clinical gestures as therapeutic tools to address the emotional and psychological dimensions of pediatric illness. Unlike purely medical or logistical support models, it emphasizes the power of personal significance, hope, and joy to counter trauma and isolation—leveraging moments like holidays, personal milestones, or identity restoration (e.g., through wigs) to create deep psychosocial impact. What distinguishes it is its focus on symbolic action as a primary mechanism for healing, rather than a supplement to clinical care.Colt 45 Strong IncMAUREEN'S HOPE FOUNDATIONINCNIGHT OUT FOR YOU INCORPORATEDWhip Pediatric Cancer Inc