Personal guidance for those navigating a kidney cancer diagnosis.
We help patients and families navigate diagnosis, treatment, and survivorship. That includes clarifying medical records and imaging, coordinating with oncologists and surgeons, and aligning care with current guidelines and the latest research. We also connect patients with leading specialists and clinical trials—including rare and non‑clear cell RCC—and support them through the process.
Direct Patient Guidance
- Review and explain medical records, pathology reports, and imaging in clear terms.
- Coordinate care and communicate with oncologists, surgeons, and providers so the patient’s priorities are always represented.
- Use advanced analysis to check that recommendations follow guidelines and reflect current evidence.
- Slow down rushed decisions; ensure options and second opinions are considered when appropriate.
- Provide steady communication from diagnosis through surveillance and survivorship.
Specialists & Clinical Trials
- Identify the most experienced physicians worldwide for each RCC subtype and secure access at comprehensive cancer centers.
- Provide access to the most complete trial resources for rare and non‑clear cell RCC.
- Support eligibility review and enrollment, from screening to application logistics.
Support Groups & Mentorship
- Weekly confidential support groups for patients and caregivers, from diagnosis through surveillance.
- Peer‑to‑peer mentorship that pairs survivors with the newly diagnosed for practical and emotional support.
- Facilitated discussions on treatment experiences, new research, and psychosocial challenges; reduce isolation.
- Access to large online communities and resources in video, text, and audio formats.
Research & Advocacy
- Members participate in peer review of kidney cancer research proposals, bringing patient perspectives to funding decisions.
- Conduct surveys and analyze recurring patient experiences to highlight unmet needs for clinicians and researchers.
- Advocate for studies in survivorship, exercise, nutrition, and mental health; collaborate with multidisciplinary teams.
Collaboration & Outreach
- Build partnerships with comprehensive cancer centers, research groups, and support organizations; encourage provider referrals.
- Organize online and in‑person events that promote awareness, mentorship, and advocacy.
- Assist patients in sharing care experiences with medical centers to help others assess quality and avoid pitfalls.
- Contribute to fundraising efforts that support kidney cancer research and patient services.
Whole‑Person Survivorship
- Provide fitness guidance developed with professionals and aligned to current oncology research.
- Support nutrition, diet, and supplementation strategies that aid recovery and long‑term well‑being.
- Address mental health, fatigue, and trauma that often follow treatment; connect to appropriate resources.
Philosophy of Advocacy
Patients are not passive participants in their own care. We prepare people to ask informed questions, seek second opinions, and stay engaged—always with respect for the medical team. Providers tell us this partnership makes their work easier: patients arrive prepared, organized, and confident, and care plans move forward with clarity.
Verification
- Organization: American Society of Kidney Cancer Advocates & Mentors (ASKCAM)
- Established: 2019
- Scope: U.S.‑based with national and international collaborations
- Mission: Non‑commercial, patient‑centered advocacy, mentorship, and research engagement