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.
The new nonprofit Every Cure has been created on the basis that every drug currently on the market effects multiple areas in the body. This premise has been proven…
An article in BioSpace announced that the FDA’s CNS committee met twice in recent months to discuss the merits of AMX0035 for the treatment of amyotrophic lateral sclerosis (ALS). Within…
This was the fifth time Yadi Martin was pregnant. The first four pregnancies ended in miscarriages. But this time it was different. The fetus had a heartbeat. As Yadi and…
Neuroscience News recently published an intriguing article suggesting that letrozole, a drug developed to treat breast cancer, has the potential to treat brain tumors. The discovery began with a question…
Seven-year-old Rydder Ames of Hamilton, Ohio began having troubling symptoms five months ago. His mother, Krista Steven took him to the ER after a week-long headache followed by a…
Dr. Sergio Baranzini of UC San Francisco recently led an international consortium of researchers in a new study of multiple sclerosis (MS). In a press release on Multiple Sclerosis…
Jim Kelly and his wife Maria still remember the day they received a call from the hospital telling them that according to test results, their daughter Adriana, now age…
A New Theory The Week reports that scientists at the Krembil Brain Institute in Toronto are working on a new theory about the origins of Alzheimer's disease. The Toronto…
Wunmi Bakare described her illness to Essence as a continuous tug-of-war. Balancing sickle cell disease with a nine to five job and trying to stay the course. Then there…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
ScienceAlert recently published an article explaining how scientists at Rice University have been able to eradicate tumors in mice by using a new treatment that takes less than a…
Five patients with acute lupus who received CAR-T were reported to be in remission according to a recent article in StatNews. Researchers are now encouraged by the prospect of treating…
If you are interested in learning about CMT or are even a little curious, this article will help to shed some light on this rare disease. You are invited by…
Although kinase-targeting drugs have been used for many years in the fight against AML and other cancers, according to a recent article published in FierceBiotech, scientists at the Cold Spring…
Medical science takes a giant leap with a process that sees tumors disappearing or significantly shrinking in 63.3 percent of cutaneous squamous cell carcinoma (CSCC) patients. According to a recent…
A recent article in SciTechDaily explains that the many failures of newly created Alzheimer’s drugs are the result of clinical plaque tests that do not identify the disease in its…
Mia Maysack is a Pain News Network columnist as well as the founder of Peace & Love life coaching practice for the chronically ill. Mia shares her ongoing saga with…
As discussed in Part I of this article, a recent HDBUZZ publication featured a news item stating that due to several severe adverse events occurring during the initial AMT-130 trial…
Often when a cure for a specific rare disease has yet to be developed, patients have enrolled in clinical trials with positive results. However, FDA-approved trials have developed a reputation…
Richard B. Woodward, a well-known New York art critic, recently shared his diagnosis of idiopathic pulmonary fibrosis (IPF) in an article featured in Stat News. He explains that the general life…
The gut-brain axis has recently been mentioned in connection with various disorders. According to an article in SciTechDaily, a study at ECU’s Centre for Precision Health confirms a genetic…
The Family Heart Foundation has a Mission. There is so much more to accomplish and you can help prevent heart attacks by spreading awareness. This could save future generations by…
David Guy, parent of Kaila who was diagnosed with acid sphingomyelinase deficiency (ASMD), recounts his initial shock when he was told of Kaila's rare disease. David and his wife…
When we ‘do the math’ it adds up to the novel AMT-130 gene therapy receiving positive results from uniQure’s clinical trial investigating a small group (N=4) of individuals who were…
MSN recently carried the gripping story of how Elizabeth Finch, a Greeley Colorado police detective, spent last year fighting for her life due to complications from an autoimmune disease…
© Copyright 2024 Patient Worthy
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.
