Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.
.jpg)
According to recent articles in Runner’s World Magazine, having a diagnosis of multiple sclerosis has not stopped Cheryl Hile, Jennifer Lee or Melissa Ossanna. Each woman is fighting the symptoms…
.jpg)
According to the UK’s National Institute for Health Research (NIHR), a new technology called machine perfusion (MP) has the potential to solve organ shortage, a major challenge in liver transplantation.…
An open letter to The Editor from Gaetani et al was recently published in the Orphanet Journal of Rare Diseases. Dr. Gaetani and associates at the Fondazione Policlinico Universitario, Rome Italy,…
.jpg)
Pfizer issued a statement this week through its Media Relations that its drug VYNDAQEL® for treatment of Transthyretin Amyloid Cardiomyopathy received positive opinion by the European Medicines Agency’s (EMA) Committee for…
.jpg)
Tahnee Hamilton was recently interviewed by KSL-TV about her young child, Avery, who was diagnosed less than a year ago with T Cell Acute Lymphoblastic Leukemia. About Veno-Occlusive disease (VOD) Avery…
.png)
CNN reported details of Ed’s illness as related by his fiancée Katy Berteau, who remained at this side continually despite risking her own health. Katy and Ed had planned to…
.jpg)
According to a recently published article in Targeted Oncology, the results of the Phase III CANDOR trial were presented at the 61st ASH annual conference in Orlando, Florida. The…
.jpg)
A recent article published in Globe Newswire heralded Marinus Pharmaceuticals’ new drug, ganaxolone. The drug has been studied in over 1600 patients and is now being tested in two clinical…
.jpg)
At times there seems to be no happy medium in life. A recent article in Bloomberg claims that the speed at which the FDA is approving newly developed drugs is…
.jpg)
Since most people cannot truly understand the challenges faced by a blind person, then an artist who cannot see is unimaginable. According to a recent article in the British…
.jpg)
When the Leukemia & Lymphoma Society (LLS) was founded in 1949 by a family in memory of their sixteen-year-old son, cancer was considered a hopeless condition. As noted recently…
.jpg)
According to a recent article in the ASH Clinical News patients are being encouraged to participate in shared decision-making (SDM) with their doctors, nurses and other medical personnel. The…
.jpg)
Encouraging results from a clinical study were reported recently in Science & Enterprise describing a treatment for ALS using stem cells extracted from a patient’s bone marrow. The clinical…
.jpg)
A recent article in Bloomberg’s SFGate focused on the price of drugs. The average patient cannot afford the price of many drugs now on the market. Insurance companies have…
On Dec 3, 2019 Share A blind artist, a motivational speaker who can’t speak and a young mom with arthritis: These are just three of the British Columbians shattering stereotypes…
.jpg)
A recent article in the Taunton Gazette describes the dilemma faced by the parents of four-year-old Jaxtien Miller who is a metachromatic leukodystrophy patient waiting for a stem cell…
A recent article in BioPortfolio carried AstraZeneca’s announcement of the FDA’s approval of CALQUENCE® (acalabrutinib) for adult patients with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). The approval…
CRISPR/Cas9 technology reached another milestone with encouraging results in two recent trials of CTX001. An article in Pharmaceutical Technology carried an announcement by CRISPR Therapeutics and Vertex Pharmaceuticals about…
Status Update: Shared Decision-Making in Hematology Sunday, December 1, 2019 Beth Faiman, CNP, PhD Certified nurse practitioner at the Cleveland Clinic in Cleveland, Ohio In this edition, ASH Clinical News…
.jpg)
The University of Southern California (USC) recently published an article in USC News announcing that researchers have discovered a technique allowing them to untangle the coiled, spiraling DNA molecules.…
.jpg)
Amber’s determination to find a miracle for her son Maxwell is detailed in a recent BuzzFeed article. Maxwell and his twin sister, Riley, were born in March 2017. For…
.jpg)
Dr. Marc Bonaca, a cardiologist with the Brigham and Women's Hospital in Boston, recently gave a presentation at the Las Vegas 2019 VIVA conference on trends in vascular disease. As reported in…
Wearing a revolutionary-era tricorn hat, doctor Mathew Maurer stood at a lectern in front of an audience of fellow cardiologists in Philadelphia, decrying the price of a new medication that…
.jpg)
An article in the Hartlepool Mail announced that Lyla O’Donovan, her parents, and her four brothers and sisters will be celebrating Lyla’s seventh birthday on November 28th, 2019 at…
.jpg)
An article appeared recently in BioNews announcing the first-ever approval of an RNA-based therapy for use on the British National Health Service. The name of the drug is Patisiran…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
