Our Values

Core Operating Values

Compassionate Connections

We foster friendship and collegiality so that everyone at any phase of a VHL diagnosis can seek and receive accurate answers to questions, ideas, resource links, and support from people with significant experience and perspective. In the VHL community, we ensure that no one feels alone.

Inclusive Excellence

We embrace everyone who can benefit from access to knowledgeable community support and medical resources, emphasizing underrepresented communities of color and other underserved communities who experience marginalization as a result of ethnicity, culture, gender, gender identity and expression, sexual orientation, socioeconomic status, geography, religion, spirituality, disability, age, national origin, immigration status, language, military status, returning citizen status, or other exceptional status or circumstance.

Information Integrity

We offer the most objective, medically informed, and up-to-date information about VHL, its diagnosis, surveillance, and treatment of the manifestations it causes. The VHL Alliance does not dispense direct medical advice to patients.

Leading Edge

We are a convening organization that continuously leads knowledge building, information gathering, and innovation to help patients, families, and caregivers to live well with VHL and the medical community to diagnose and evolve the most effective treatments.

Guiding Principles

We believe:

  1. Every person deserves access to quality healthcare for their particular healthcare needs. Quality healthcare includes healthcare providers (see the description in the supporting partners’ section) knowledgeable about the VHL disease and updated in the treatment approaches of tumors and cancers caused by the VHL condition, including new medications, clinical trials, and experimental treatments for VHL-related illnesses.

  2. Every person deserves to be part of a community of like-minded people who want to learn from each other’s stories and give each other hope.

  3. Every patient, family member, and caregiver has a voice about their health and healthcare needs that decision-makers need to hear. The VHL Alliance helps build confidence to share these voices.

  4. Every patient, family, and caregiver has unique interests and needs. We respect each person’s situation by offering various programs and types of assistance and support and continuously looking for new opportunities to evolve what the VHL Alliance provides.

  5. By listening, we expand our understanding.

  6. By tapping into our community connections, we can increase access