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PSSGuide_2021

Patient Advocacy

Cancer ResearchClinical TrialsPatient Advocacy
The role of patients in clinical trials is slowly changing, but enlightening more pharmaceutical companies about the value of the patient’s perspective in designing clinical trials is still a challenge.
Patient Advocacy
"The patient advocate is a sidekick, whose job is to help someone else become their best," says Ron Suskind, who learned how to be there for his son.
Multiple MyelomaPatient Advocacy
The death-defying feats of James Bond were explored on an episode of the Lifetime network’s The Balancing Act. No, not that James Bond. Our James Bond didn’t hail from the UK’s Secret Service, but is an American who has been besieged by a foe as lethal as Dr. No or SMERSH–the rare blood cancer multiple myeloma.
Cancer ResearchMultiple MyelomaPatient Advocacy
Jack Aiello, multiple myeloma survivor, looks at the importance of patient advocacy and breaks down the different areas of advocacy.
Breast CancerPatient Advocacy
Musa Mayer, breast cancer survivor and advocate, was recently recognized for her 25 years of advocacy on behalf of patients with advanced breast cancer. Read Musa’s inspiring story.
Patient AdvocacyPatient StoriesBiomarkersColorectal Cancer
Wenora Y. Johnson, 3-time survivor, shares her cancer story and encourages patients to ask their care team about biomarker testing.
Patient AdvocacyMultiple Myeloma
Yelak Biru stresses the importance of paying it forward and sharing your knowledge with others in regard to patient advocacy.
Patient Advocacy
Yelak Biru believes that a cancer diagnosis affects a person's entire family and support network, and notes that there are various ways for patients with cancer to involve and inform their families about their treatment.
Patient Advocacy
Yelak Biru describes how patients can benefit from becoming involved in patient advocacy.
Patient Advocacy
Yelak Biru provides some direction for people who are interested in becoming a patient advocate.
Patient Advocacy
Yelak Biru explains the role of the patient advocate and what inspired him to become one.
Lung CancerPatient AdvocacyPatient Stories
Hildy Grossman describes her struggle with the stigma linked to a lung cancer diagnosis and her work, through Upstage Lung Cancer and music, to educate the public about lung cancer.
Breast CancerPatient Advocacy
Hope Nemiroff’s inability to easily get answers to some of her questions during her breast cancer experience led her to establish Breast Cancer Options, which offers free services, education, and advocacy to patients with breast cancer.
Financial SupportPatient Advocacy
After facing the potential financial burden of his own medical bills, cancer survivor David Mitchell founded Patients for Affordable Drugs, a nonprofit organization aimed to control the cost of drugs and make them affordable for patients with cancer.
BiomarkersPatient AdvocacyPatient StoriesColorectal Cancer
Wenora Y. Johnson, 3-time survivor, shares her cancer story and encourages patients to ask their care team about biomarker testing.
Patient AdvocacySurvivorship
Lisa Lurie went from “bald, breastless, and bewildered” to all-glammed-up as a cancer survivor and founder of Cancer Be Glammed, a nonprofit organization that empowers women to recover with dignity and positive self-esteem. Last fall, Lisa was a finalist for CONQUER’s Hero of Hope Patient Award, and although she didn’t win, this experience was a milestone in her cancer story.
Patient AdvocacyPatient StoriesProstate Cancer
Dennis Golden was an active, fit, 70-year-old when he learned he had prostate cancer. He was surprised to discover that few men know the warning signs and how potentially serious it can be. In response, he formed the National Prostate Cancer Awareness Foundation to educate men about this disease.
Patient Advocacy
Kathy Gram faced colorectal cancer with a positive attitude, good humor, and support from family and close friends. When her disease was in remission, she shared her hard-won wisdom with others as a Patient Advocate. She reflected on the lessons she had learned as a 12-year cancer survivor.
Patient AdvocacySurvivorshipBrain Cancer
Shortly after his college graduation, Danny Heinsohn’s world turned upside down when he learned he had a brain tumor. He shares his inspiring story of overcoming adversity and finding something to celebrate every day, even while dealing with cancer.
Lung CancerPatient StoriesPatient Advocacy
A chest x-ray and a CT scan revealed a diagnosis of stage IV (advanced) non–small-cell lung cancer after John Doll was experiencing shortness of breath and a lingering cold.
Financial SupportPatient Advocacy
Ayesha Azam, VP of Medical Affairs at the Patient Access Network Foundation, explains the different ways that this organization provides financial assistance and grants for nearly 70 different medical conditions, including cancers and rare diseases. Find out if you qualify for financial support.
Family MembersPatient Advocacy
Kimberley Norris relates her experience as a bedside advocate for her husband, Rick, after his esophageal cancer diagnosis, introducing her discussion of the challenges of advocating for a hospitalized patient with cancer.
Patient Advocacy
Cancer treatment is complicated; an oncology patient advocate can help uncomplicate the journey by advocating and being a voice for their patients with cancer.
Brain CancerPatient StoriesPatient Advocacy
Jessica Morris was blindsided by her brain cancer diagnosis after hiking with friends and having a full-blown seizure. Frustrated by the lack of treatment options for and the short life expectancy associated with glioblastoma, she created the nonprofit organization OurBrainBank.
Fertility PreservationPatient AdvocacyPatient Stories
Amanda Rice was 37 when she was diagnosed with breast cancer for the first time. She describes her decision to freeze her eggs after her diagnosis, which led her to launch the nonprofit organization The Chick Mission to educate women on the impact of cancer treatment on becoming mothers.
Patient Advocacy
Kimberley Norris uses her experience as her husband’s bedside advocate to describe what it means to be a bedside advocate, providing physicians’ practical tips for people who are in a similar situation.
Patient AdvocacyFamily Members
Mark DeLong’s son Peter was diagnosed with Ewing sarcoma, a rare bone cancer, at age 14, and died when he was just 16. Mark uses advocacy to raise funds for cancer research in Peter’s memory.
Patient AdvocacyBreast Cancer
Nicole Fuller went from being on the patient side of breast cancer to becoming an oncology navigator and advocate, cancer exercise specialist, and motivational speaker. This is her story.
Patient StoriesLung CancerPatient Advocacy
Montessa Lee’s pain persisted after an initial visit to the doctor and a misdiagnosis. Finally, an x-ray in the emergency room revealed a 15-cm mass on her left lung. Read how she turned anger into action.

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