Patient Advocacy

Patient advocacy groups are organizations set up to represent and support patients and their families by providing:

  • Patient education
  • Legislative and regulatory advocacy
  • Clinical and translational research
  • Disease awareness and fundraising

These organizations also offer resources to help patients and caregivers learn more about living with a disease, scientific advancements, policy updates and how to afford medical treatment.

Need help finding an advocacy organization?

Call the Genentech Patient Resource Center at (877) GENENTECH or (877) 436-3683.

Learn more about how Genentech partners with national and local advocacy groups across the health care landscape to identify, gain consensus and drive action on critical patient needs:

“Genentech is committed to building and strengthening relationships across our patient communities to push boundaries to put patients first. We believe in going ‘beyond the medicine’ to support patient communities.”

Sonali Chopra, Head of Patient Advocacy, Genentech, A Member of the Roche Group

Patient Perspective

Science can reveal much about an illness, but it can’t tell us how people actually experience their disease. More and more, patients have become experts in their disease and treatment options as well as advocates for their own health, managing critical decisions and choices. They are looking to manufacturers to learn more about scientific advancements, disease education, and patient support programs.

At Genentech, we believe the patient voice must be heard – and integrated – as we develop and commercialize our medicines. We look to our patient communities for valuable insights and to deepen our understanding of their day-to-day realities, their medical care, and what they desire from a new therapy.

In 2022, PatientView ranked Genentech #1 among the top 15 "big-pharma" companies in overall corporate reputation in the United States. Rankings are based on opinions from more than 2,200 patient groups worldwide.

Learn more about resources provided by Genentech to help patients and caregivers along their health care journey:

Sister Pact

Sister Pact is a campaign and website created to encourage women to get regular breast cancer screenings and direct them to national resources for access to free or low-cost mammograms, transportation options and financial assistance.

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Gather MS

GatherMS is a website brought to the multiple sclerosis (MS) community by Genentech that brings together existing resources to help people with MS navigate the everyday unpredictability of the disease.

Learn More
SMA My Way

SMA My Way is a website created in collaboration with members of the spinal muscular atrophy (SMA) community that focuses on supporting all people impacted by SMA and helps them live their lives, their way.

Learn More

Advocacy Partners

Patient advocacy organizations provide manufacturers a window into patients’ experiences so that we better understand their perspectives and needs as we strive to make an impact beyond our medicines by uncovering and pursuing ways to bring potential new treatments to patients. Today, Genentech has relationships with more than 500 patient advocacy organizations across 50 disease areas. We work with organizations on public policy, public relations, disease awareness, and collaborations that advance patient communities’ and Genentech’s goals. We are committed to transforming society through meaningful partnerships that focus on advancing inclusive research and health equity in underserved patient communities.

  • >500 relationships with patient advocacy organizations
  • 50 disease areas included in our advocacy efforts

Engage Early and Often

We collaborate with patients, thought leaders, advocacy organizations and other experts early and often throughout the life-cycle of our medicines, from early development onward. In recent years, Genentech has focused on expanding partnerships with organizations that specifically support underserved patient communities.

In recent years, Genentech has focused on expanding partnerships with organizations that specifically support underserved patient communities.These partnerships enable us to gather valuable insights into an array of topics ranging from clinical trial design and recruitment to access and supply challenges. Insights gained from our advocacy partners have enabled us to communicate in ways that reach patients of all cultural backgrounds and to increase diversity and minority representation in clinical research by prioritizing health equity in clinical trials.

Giving

Genentech strives to create a future of science that is more diverse, inclusive and equitable. Our giving reflects this vision, and supports schools, community-based organizations, patient groups, and scientific and medical communities to help uncover and deliver solutions that ensure a healthier future for everyone. We make philanthropic donations to advocacy groups and other community non-profit organizations to support the critical services they provide, such as peer-to-peer connection programs, professional counseling, and disease awareness and education.

We make philanthropic donations to advocacy groups and other community non-profit organizations to support the critical services they provide, such as peer-to-peer connection programs, professional counseling, and disease awareness and education. Each year we support hundreds of patient-focused programs and services across the U.S. in more than 50 disease areas.

Our Commitment

As a prominent leader in oncology, Genentech partnered with the American Cancer Society on the Return to Screening initiative at the beginning of 2021. This is a nationwide, multi-sector collaboration to promote resuming cancer screening, which was severely impacted by the coronavirus pandemic. Millions of people have missed their routine cancer screenings, resulting in a significant decline in cancer diagnoses and timely intervention.

The initiative also reflects our broader commitment to support the development of interventions to advance health equity. Health care disparities are multifaceted and require us to examine and address disparities throughout the healthcare ecosystem. These include access to and quality of care, availability of social support for patients, and unequal treatment or lack of cultural competence in care.

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After a very uncertain year for people living with multiple sclerosis (MS) and other neurological disorders, we kicked off a broad #MSVisibility movement in March 2021 to shine a light on the diversity, strength and tenacity of the MS community and to encourage people with MS, and potentially those who may not yet be diagnosed, to seek appropriate care during the pandemic. 

With support from major MS advocacy groups – including The National MS Society, Race to Erase MS, Can Do MS, Multiple Sclerosis Foundation and Multiple Sclerosis Association of America – our goal is to not only increase the visibility of available resources, but also to highlight the importance of inclusive MS research.

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Genentech has also collaborated with organizations like Cure SMA and the Guthy-Jackson Charitable Foundationto connect with affected families and participate in scientific research essential to find new treatments options.

Our relationships with these groups have yielded insights and tools that simply wouldn’t exist otherwise. For example, while early spinal muscular atrophy (SMA) research focused mainly on pediatric patients – partly because SMA is the leading genetic cause of death in infants and toddlers – patients helped us learn about the different types of SMA, and we were inspired to include a broad range of people living with SMA, including adults, in our clinical trial program. With help from patients involved with Cure SMA, we also developed a novel measurement scale — a system for quantifying changes in an SMA patient’s motor skills and their impact on daily life.

Learn more about Genentech’s efforts to foster advocacy partnerships, address health disparities and advance solutions to improve patients’ access to life-changing medicines: