Advocates
I'm not a scientist. I'm not a clinician. I'm there on behalf of patients - Nancy Roach, Advocate For Patients
image by: Pancreatic Cancer Action Network
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A Patient's Advocate Story
When we first started going to doctors appointments with my Mom after her Ovarian Cancer diagnosis, my sisters and I assumed that our role was to be an extra set of eyes and ears in the exam room. And that was true to some extent. Especially at the very beginning.
But over time we came to realize that a far more important contribution was being an extra set of eyes and ears between doctors’ appointments. Helping to make sure my Mom was taking her medications, and creating a schedule for those meds that worked for her. Helping make lists of things she wanted to discuss with her doctors, and jumping into the discussion when "chemo brain" set in and she couldn't remember anything from…
Resources
'It's the bit the NHS cannot fix': Demand for cancer support soars during lockdown
When the UK lockdown was announced, charities that provide psychological and practical support to the 367,000 people diagnosed with cancer each year scrambled to put the peer groups, therapies and counselling that draw visitors to their centres on to telephone lines and virtual platforms.
How Can You Be a Cancer Patient Advocate?
What can you do if you are a cancer patient today in the midst of uncertain circumstances around the future of health care in this country? One of the fundamental requirements for an American democracy is the voice of the people. As an active citizen in a democratic society, you can be engaged.
A partnership with patients: How Takeda Oncology builds trusted relationships with advocacy
Today, patient advocacy is a core function within Takeda Oncology and has taken hold across the industry. As a pioneer in this space, Takeda Oncology now collaborates with more than 15 patient groups and has established several Patient Leadership Councils, comprised of patient and caregiver champions with various types of cancer who provide us with feedback and input pertaining to our business initiatives.
History of Breast Cancer Advocacy
During most of the 20th Century, a woman diagnosed with breast cancer underwent a radical mastectomy. Decisions were made by physicians, and women often learned of their cancer diagnosis when waking up from surgery, absent one breast. A public discussion about breast cancer – especially your breast cancer – was unthinkable.
How support groups can boost your health and make chronic conditions easier to live with
People want to look after their own health, and with new technology, there are more tools than ever to help people manage it. But the greatest gains could come from a little help from your friends. For people living with chronic health conditions such as arthritis, diabetes and cancer, the health system can seem impersonal and impractical.
How To Be a Self-Advocate: Standing Up For Yourself as a Cancer Patient
It seems like such a simple concept – standing up for yourself. But what if you don’t like confrontation? What if you’re shy? What if you get overwhelmed in the moment and don’t remember what you wanted to ask? What if you’re scared to ask a “stupid question?”
One-on-One Patient Advocacy
Why is this one-on-one advocacy necessary? Of all the illnesses that one can be diagnosed with, cancer is such a complex disease and is so defiant of a "cookie-cutter" or formulaic approach that the patient's level of stress, anxiety and confusion often starts out and stays at an all-time high. Such stress, of course, works against the internal stamina needed to fight the disease.
The power of advocacy in blood cancer: Lorna’s story
To keep a pulse on the most current and pressing issues facing patients globally, the Lymphoma Coalition surveys patients and caregivers every two years to understand their top challenges.
Transforming research: engaging patient advocates at all stages of cancer research
In recent years there has been a push to include patients and advocates in clinical research, including in clinical trial design and approval processes. Additionally, increased advocate-driven research funding has led to seats for advocates in the funding review process.
What kind of support do breast cancer patients want? Food, rides and prayer
Because breast cancer is not a static event, but rather a journey of physical and emotional changes, there is no “one size fits all” approach to supporting women with this disease. Knowing how best to support breast cancer survivors is an ongoing process of changing expectations and needs based on where they may be in their treatment experience.
A Patient's Advocate Story
When we first started going to doctors appointments with my Mom after her Ovarian Cancer diagnosis, my sisters and I assumed that our role was to be an extra set of eyes and ears in the exam room. And that was true to some extent. Especially at the very beginning.
CanCare
You are not meant to endure cancer alone. Cancer is hard, but it doesn’t have to be lonely.
Cancer Hope Network
Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. We provide that support by matching cancer patients and/or family members with trained volunteers who have themselves undergone and recovered from a similar cancer experience.
Cancer Support Community
Transforming the cancer experience through community and connection.
CancerCare
CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer.
CancerConnect
CancerConnect is a comprehensive online resource center and social network for cancer patients and their caregivers. Since 1996, it has been providing best in class, disease-specific patient information, covering relevant topics such as latest treatments, management of side effects, clinical trials, and support groups.
Living Hope Cancer Foundation
We exist to offer cancer coaching.
International Cancer Advocacy Network
The ICAN® mission is to assist and empower late-stage patients worldwide with cutting-edge information regarding anticancer drugs in clinical trials as well as physician referrals at the patient’s request based on the patient’s reported medical situation.
National Coalition for Cancer Survivorship
NCCS’ mission is to advocate for quality cancer care for all people touched by cancer. Founded by and for cancer survivors, NCCS created the widely accepted definition of survivorship and defines someone as a cancer survivor from the time of diagnosis and for the balance of life.
Society for Cancer Advocacy and Awareness
We are a group of people that is dedicated to be the voice of Sarawak people in matters affecting our cancer health care and to educate the general public.
Bladder Cancer Advocacy Network
The Bladder Cancer Advocacy Network (BCAN) is a community of patients, caregivers, survivors, advocates, medical and research professionals united in support of people touched by bladder cancer.
Pancreatic Cancer Action Network
Our mission is to take bold action to improve the lives of everyone impacted by pancreatic cancer by advancing scientific research, building community, sharing knowledge and advocating for patients.
Stand Up To Cancer
Stand Up To Cancer works relentlessly to offer the newest, most effective, and most promising cancer treatments to patients quickly by bringing together the best minds to collaborate, innovate, and share cancer research.
Young Survival Coalition
Young Survival Coalition (YSC) strengthens the community, addresses the unique needs, amplifies the voice and improves the quality of life of young adults affected by breast cancer, locally, nationally and internationally.
Zero
As ZERO — The End of Prostate Cancer, we commit ourselves not only to reduce prostate cancer or alleviate the pain from the disease but to end it.
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