Active Surveillance Patients International

Active Surveillance Patients International (ASPI) is a non-profit based in East Stroudsburg, PA, created by men with prostate cancer (PCa) for men with prostate cancer. The founders all took a proactive approach to Active Surveillance (AS). They witnessed overtreatment and confusion about monitoring. Men from all walks of life contacted us seeking guidance and felt that this organization might be a vehicle to help. Two decades ago, men on AS were almost unheard of; now, over 50% of men with low-grade prostate cancer practice AS, and we know that there are still newly diagnosed men with Gleason 3+3 and favorable intermediate prostate cancer, Gleason 3+4 who might want to consider AS as their “treatment.” ASPI supports the concept of the proactive patient who is interested in reading materials and watching videos as part of their research, participates in support groups and webinars, attends (if possible) relevant conferences, and, most importantly, establishes decision-sharing relationships with their doctors.

American Cancer Society Cancer Action Network

The American Cancer Society Cancer Action Network (ACS CAN) advocates for evidence-based public policies to reduce the cancer burden for everyone. They engage their volunteers across the country to make their voices heard by policymakers at every level of government. They believe everyone should have a fair and just opportunity to prevent, detect, treat, and survive cancer.

Since 2001, as the American Cancer Society’s nonprofit, nonpartisan advocacy affiliate, ACS CAN has successfully advocated for billions of dollars in cancer research funding, expanded access to quality affordable health care, and advanced proven tobacco control measures.

They stand with their volunteers—people whose lives have been impacted by cancer—rallying to demand change. Together, they are working to make cancer a top priority for public officials and candidates at the federal, state, and local levels. By engaging advocates across the country to make their voices heard, ACS CAN influences legislative and regulatory solutions that will end cancer as we know it, for everyone.

ARTIZO LLC

ARTIZO LLC, founded by a man, for men, is a specialty physical therapy clinic in Northern Virginia focus on male pelvic health and sexual rehabilitation. Started by Cris Dervin Fedalizo, Doctor of Physical Therapy and Board Certified Orthopedic Clinical Specialist, it provides evidence based, one on one care for men who are struggling with erectile dysfunction, urinary and bowel dysfunction, pelvic pain, and post prostate cancer sexual complications. The practice integrates orthopedic principles, pelvic floor rehabilitation, breathing mechanics, and nervous system regulation to deliver, comprehensive, discreet care tailored to high-performing professional seeking expert level of care and treatment and meaningful functional recovery.

Association for Pelvic Organ Prolapse Support

The Association for Pelvic Organ Prolapse Support (APOPS) is a 501(c)(3)nonprofit dedicated to educating, supporting, and advocating for women navigating pelvic organ prolapse symptoms and stigma, clarifying POP understanding, and advancing patient outcomes. 

Association for the Bladder Exstrophy Community

The Association for the Bladder Exstrophy Community exists to provide information about this rare defect and support to individuals and their families through education, advocacy and support. 

Bladder Cancer Advocacy Network

BCAN advocates for better todays and more tomorrows for everyone impacted by bladder cancer by focusing on four critical areas: education, support, research and policy. 

Blue Cure

Blue Cure is a national nonprofit focused on men’s health, prostate cancer awareness, and prevention through education and lifestyle medicine. Founded by a prostate cancer survivor diagnosed at age 35, Blue Cure provides trusted, evidence-informed content that helps men and families better understand risk, screening, and treatment decisions. Through physician interviews, public education campaigns, and community outreach, Blue Cure works to reduce stigma, promote early detection, and support informed conversations between patients and their care teams. The organization also collaborates with leading clinicians and institutions to translate complex medical information into clear, practical guidance for the public. 

CancerCare

For over 80 years, CancerCare has empowered millions of people affected by cancer through free counseling, resource navigation, support groups, educational resources, advocacy and direct financial assistance. 

Caregiver Action Network

Caregiver Action Network (CAN) is the nation’s leading family caregiver organization. It works to improve the quality of life for tens of millions of family caregivers. These Americans care for loved ones with chronic conditions, disabilities, or diseases. CAN also supports those meeting the living needs of older adults.

Chris "CJ" Johnson Foundation Inc.

The Chris "CJ" Johnson Foundation operates with the mission to be a global community dedicatd to advocating for individuals diagnosed with renal medullary carcinoma (RMC), an aggressive and often fatal kidney cancer. Our advocacy is through awareness, education, support and research. Ultimately, all individuals diagnosed with RMC will have access to institutions that are leaders in cutting-edge research.

FORCE: Facing Our Risk of Cancer Empowered

FORCE improves the lives of the millions of individuals and families facing hereditary cancer. This includes people with a personal or family history of cancer, Lynch syndrome, a BRCA1, BRCA2, ATM, CHEK2, PALB2 or other inherited mutation linked to cancer.  They accomplish this through education, support, advocacy and research efforts. They are dedicated to providing up to date, expert-reviewed information and resources that help people make informed medical decisions. Their strong, supportive community of peers and professionals ensures no one must face hereditary cancer alone. FORCE serves as a champion, unifying the community and advocating for awareness, access to care, and better treatment and prevention options.

Interstitial Cystitis Association

The Interstitial Cystitis Association (ICA) advocates for research dedicated to discovery of a cure and better treatments, raises awareness, and serves as a central hub for the healthcare providers, researchers, and millions of patients who live with interstitial cystitis/bladder pain syndrome (IC/BPS), a condition characterized by chronic pelvic and bladder pain and urinary urgency and frequency.

Joey's Wings

Joey’s Wings Foundation, a 501(c)(3) nonprofit established in 2014 in memory of Joey Xu, a 10-year-old who passed away from translocation renal cell carcinoma, is dedicated to supporting children and young adults with kidney cancer through research, advocacy, and family support. The foundation funds critical research on tRCC, sponsors educational symposium, raises awareness through events like the annual Joey’s Wings 5K, provides financial grants and services for affected families, and advocates for increased research funding.

Judy Nicholson Kidney Cancer Foundation (JNF)

The Judy Nicholson Kidney Cancer Foundation (JNF) partners with newly diagnosed through Stage IV kidney cancer patients, caregivers, and families, providing personalized, one-on-one support so no one walks this path alone. Founded in 2009, JNF delivers targeted resources including expert-led virtual and in-person educational programs, monthly peer support forums, oncology nutrition guidance, the Real Talk on Renal Cancer podcast, bilingual support through their Hispanic liaison, and their annual Celebration of Life Dinner honoring survivors and advocates, including presentation of our Advocacy Champion Awards. JNF also advances renal cell carcinoma research by supporting the AACR Scholar-in-Training Awards, helping accelerate innovation and improve patient outcomes. 

Kidney Cancer Association (KCA)

The Kidney Cancer Association was founded in 1990 by Eugene P. Schonfeld and a small group of patients and doctors in Chicago, Illinois and has grown into an international non-profit organization. The KCA promotes scientific advances through two annual research symposiums and a robust grant program, participates in legislative advocacy, and seeks to be a source of education and resources for patients, caregivers, and anyone impacted by kidney cancer. Their vision is to be the universal leader in finding the cure for kidney cancer. Their mission is to be a global community dedicated to serving and empowering patients and caregivers, and leading change through advocacy, research, and education.

Live UTI Free Ltd

Live UTI Free (LUF) is a multinational patient research and women's health education organization with a focus on recurrent and chronic UTI. LUF maintains an extensive online patient community, and connects researchers, clinicians and individuals living with UTI, alongside providing professional research and recruitment support. 

Malecare

Malecare is the United States' leading men's cancer support and advocacy nonprofit. Founded in New York City in 1997 and incorporated under the Malecare name in 2004, the organization combines peer-based programming, health equity research, and technology innovation to extend both the length and quality of life for men with cancer — with particular focus on those from historically marginalized communities. Every service Malecare provides is free of charge. 

Man Up to Cancer

Man Up to Cancer inspires men to connect and avoid isolation during their cancer journeys. As a leading support community for men impacted by cancer in North America, we offer peer-to-peer support, an annual retreat, chemo backpack program, learning opportunities, and more than 50 local chapters geared toward improving the quality of life of our members.

When faced with cancer, women tend to “reach out,” and men tend to “check out.” This leads men down the path toward mental health problems, strained relationships, and poor medical outcomes.

It’s time for a new path. We are changing what it means to “Man Up.” It’s not just about being tough. It means having the courage to accept help, and knowing we are smarter and stronger as a pack than we are as lone wolves.

Men's Health Network

The Men's Health Network is a national non-profit organization dedicated to reaching men where they live, work, play and pray. Thjey develop and implement programs to increase engagement with the healthcare system and to improve outcomes through prevention, early detection and early treatment.  Through mechanisms such as their creation of Men's Health Week, they foster engagement to improve health and longevity not only for the the benefit of the men themselves, but also for the sisters, wives and daughters who love them, for employers who too often lose good workers to premature disability and death and to communities that lose the contributions of those men.

Patient Empowerment Network

Patient Empowerment Network (PEN) is a national nonprofit organization dedicated to empowering patients and care partners impacted by cancer through trusted education, health literacy, shared decision-making, and health equity. PEN provides free digital programs, multilingual resources, expert-led education, and advocacy initiatives that help individuals better understand their diagnosis, treatment options, and access to quality care. PEN works across multiple cancer types, including urologic cancers, with a focus on underrepresented communities.

RESOLVE: The National Infertility and Family Building Association

RESOLVE: The National Infertility and Family Building Association empowers people navigating their fertility journey through trusted information, community support, and grassroots advocacy that make family building options accessible to everyone.

Spina Bifida Association (SBA)

Spina Bifida Association (SBA)'s mission is to build a better and brighter future for all those impacted by Spina Bifida. Spina Bifida Association is devoted to responding to the needs of those whose lives have been touched by Spina Bifida, one of the most common, permanently disabling birth defects that is compatible with life in the United States. SBA has done so by Its persistent advocacy efforts; In-depth research and review of current scientific and medical investigations; Creating regular opportunities for members of the community to learn from and interact with each other; Providing information that people with Spina Bifida and their families can use to improve their quality of life; and Supplying health care providers with best-practices that will help them care for people with Spina Bifida throughout their lives. They envision a world where everyone impacted by Spina Bifida is accepted and thrives.

Triage Cancer

Triage Cancer is a national, nonprofit organization that provides free education on the legal and practical issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources. Triage Cancer's Legal & Financial Navigation Program offers free one-on-one help with issues such as work, health and disability insurance, finances, and estate planning. Triage Health, a program of Triage Cancer, provides free education on the legal and practical issues related to navigating a chronic or serious medical condition.  Triage Cancer also engages in policy analysis, thought leadership, and advocacy to inform patient-centered reforms and promote sustainable, equitable healthcare systems that better meet the needs of people living with chronic or serious medical conditions and their caregivers.

United Spinal Association

United Spinal Association represents the nation’s 5.5 million wheelchair users. They proudly trace our roots to the paralyzed World War II vets who came home to an inaccessible nation and made it their new mission to create a fully inclusive society. They honor them by using today’s tools to directly provide top-notch service and resources to our members, chapters, and the broader disability community.

Von Hippel Lindau Alliance

The VHL Alliance is a 501c3 non-profit focused on supporting patients, families, and caregivers affected by von Hippel Lindau disease (VHL). Curing cancer through VHL research. Improving quality of life and health outcomes for VHL patients, families, and caregivers with inclusive community building, connections to excellent education and treatment options, and advancements in medical research.

Von Willebrand Disease Connect Foundation

VWD Connect Foundation Inc. is a national nonprofit organization dedicated exclusively to serving individuals and families affected by severe von Willebrand disease (sVWD), an ultra-rare and life-threatening condition. Through annual in-person patient conferences and year-round virtual programming, they create meaningful opportunities for Members to connect, build community, and find support from others who truly understand their experience. By bringing patients together with medical, scientific, and allied professionals, they help strengthen the path to diagnosis, treatment, education, and awareness while also supporting research that benefits the von Willebrand disease community and moves us closer to a cure.

Your Prostate Cancer.Help

The mission of Your Prostate Cancer.help is to help prostate cancer patients, caregivers, and care partners engage in Shared Decision Making in their cancer journey through better understandings of their own cancer, the medical system, and their personal needs and desires.  Led by founder and CEO, Jan Manarite, they do this through patient-first and caregiver-first FREE conferences, webinars, articles, and individual help.  They also support and engage in policy activities that put, or keep patients and caregivers first in their journey.     

ZERO Prostate Cancer

ZERO Prostate Cancer (ZERO) is on a mission to improve and save lives from prostate cancer through advocacy, education, awareness, and support. Formerly known as the National Prostate Cancer Coalition, ZERO was founded in 1996 to stand up for people impacted by prostate cancer. Today, ZERO serves as the nation's leading prostate cancer organization, advancing a future where prostate cancer detection is early, support is unwavering, and care is accessible to all. For over 30 years, ZERO has led the way in prostate cancer advocacy, screenings, and partnerships, successfully unlocking funding toward breakthrough discoveries, treatments, and lifesaving access to care. As the nation’s #1 provider of prostate cancer resources, programs, and services, ZERO has supported millions of people at-risk or diagnosed, and their families. As the voice of the prostate cancer community, ZERO's urgent focus on breaking barriers to survival—by closing gaps in diagnosis, treatment, and care—brings critical attention to those most likely to be impacted by this disease.