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37 results for "patient advocacy"
A new $2.8 million program gives prostate cancer patients reliable medical information and conversation guides before they make life-changing treatment decisions. The mobile platform uses AI to answer questions and prepare families for doctor visits during one of the most overwhelming moments of their lives.
A mother whose daughter was diagnosed with a rare genetic disorder created an AI platform that saves families 53 hours a week and accelerates treatment research by up to 50%. Citizen Health now helps over 8,000 patients across 350 rare diseases navigate care and connect with others facing the same challenges.
A Colorado scientist's decade of detective work just gave hope to families battling Blau syndrome, a genetic disease affecting fewer than 1,000 Americans. Two patients are already seeing remarkable results.
A medical student who inherited the genetic mutation that killed her father is now leading eleven research projects to cure ALS before it affects her. Yentli Soto Albrecht has a 95% chance of developing the fatal disease, but she's turning her fate into fuel for breakthrough research.
A man diagnosed with ALS on Valentine's Day 2014 chose to become the first volunteer in a Johns Hopkins study aimed at improving quality of life for others with the disease. Instead of waiting at home, Tim Evans is dedicating his remaining time to advancing research that could help thousands.
Patients in England with advanced gastrointestinal stromal tumors now have a fourth treatment option after NHS approved ripretinib, a drug that extends life with fewer side effects. For those who've exhausted all other therapies and faced weeks to live, this approval brings genuine hope.
British Columbia became the second Canadian province to cover menopause hormone therapy, a breakthrough that could help thousands of women access life-changing treatment. The victory comes after years of advocacy from women who struggled in silence with debilitating symptoms their doctors didn't recognize.
One day after a local news investigation aired, a medical equipment company wiped out nearly $3,000 in wrongful bills charged to a Galena cancer survivor. The story shows how accountability journalism can change lives when individuals feel powerless against corporate billing errors.
A Utah mother of six given two years to live is now cancer-free and using AI to help patients worldwide find breakthrough treatments. Her platform now serves tens of thousands and is expanding to help even more cancer patients discover life-saving options.
When someone told a young woman she was "too close" to her family's disease to become a researcher, Jill Briceño had the perfect response. Her answer, inspired by mastering Cuban cooking, could change how we think about rare disease research.
When seven-year-old Mundo couldn't shake a dangerous C. diff infection after four months, his mom discovered the treatment that could save him had suddenly become nearly impossible to access. Her fight reveals how FDA regulations meant to protect patients sometimes stand in the way of healing.
After beating multiple myeloma twice through clinical trials, Julie Cohen turned her battle into a mission. She now dedicates her life to coaching other cancer patients through their darkest moments.
Pam Traxel, a senior leader at the American Cancer Society, is celebrating 19 years of cancer advocacy with a challenge that could help millions. She's asking supporters to donate $19 and share their personal connection to the fight against cancer.
Millions with long COVID now have a free resource that lists 24 prescription medications and other treatment options they can discuss with doctors right now. Created by patients and clinicians, the guide aims to end the "nothing can be done yet" message many people hear.
A targeted treatment for aggressive bile duct cancer is helping patients live longer with fewer side effects than chemotherapy. UK health officials will review new evidence in March after patients and families campaigned for NHS approval.
When Britt Mayo was diagnosed with leukemia in 2010, one conversation about his life priorities helped him avoid chemotherapy and qualify for a trial that led to remission. Now he's helping other patients learn they have choices in their cancer care.
When a 30-year-old first responder was told she was too young for cancer screening, she trusted her gut instead. Her persistence led to a Stage IV diagnosis and a mission to help others advocate for early detection.
The U.S. just approved the largest federal ALS research budget in history at $315 million. New treatments targeting the disease's root causes are showing real promise for the first time.
After more than a decade of frustration, the federal government will finally launch a centralized directory of doctors and hospitals with accurate insurance information. Patients have long struggled with outdated provider lists that leave them guessing which doctors actually take their insurance.
Consumer advocates are asking the government to authorize cheaper versions of popular weight loss and diabetes medications that millions of Americans can't afford. The move could help patients nationwide access drugs that have been out of reach due to high prices.
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