According to a story from Medpage Today, a recent study found that a dual immunotherapy approach could be an effective treatment for cervical cancer that had been previously treated, has…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
EDIT-301 is an investigational, gene editing medicine developed by Editas Medicine for the treatment of beta thalassemia. As recently reported in the Business Insider, EDIT-301 has just been granted the…
In a news release from late May 2022, pharmaceutical company SteroTherapeutics LLC, known for developing orphan drugs for rare conditions, shared that its novel therapy ST-003 received Orphan Drug designation…
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…
Katharina Clark has always wanted to make a difference. For as long as she can remember, Katharina has held a keen interest in the healthcare sector. Before she was diagnosed…
On May 25, 2022, the Rare Disease Legislative Advocates (RDLA) held a briefing for the Rare Disease Congressional Caucus. This virtual event provided an update on various legislative initiatives relevant…
In the past, medical research has shown that the STAT3 protein plays a role in regulating inflammatory responses throughout the body; it also plays a role in cell proliferation,…
When Hailey Huddleston was just two years old, she had her first seizure. At first, her parents – Tim and Lisa – weren’t sure if Hailey was having a night…
Dr. Anthony Fauci, NIAID Director, and his colleagues have suggested the possible use of a promising new vaccine for people at high risk of contracting a rare, deadly mosquito-borne virus.…
Rachel Harrison remembers what the doctors told her when her daughter Hope was born – that she wasn’t going to make it. You see, Hope was born with a rare…
The FDA has just provided AB001 the Orphan Drug designation for both acute myeloid leukemia (AML) and pancreatic cancer. This small molecule was developed by Vopec Pharmaceuticals and Agastiya Biotech.…
The U.S. Food and Drug Administration (FDA) has recently granted approval to tisagenlecleucel, which is marketed under the name Kymriah, for adult patients with relapsed or refractory (R/R) follicular lymphoma…
Mandy Maysey is a 49-year-old mum living in Australia with her three children, who are all coping with an unpredictable disorder. Tourette syndrome (TS) is a neurological disorder involving repetitive…
According to a recent article, a medical professional shared the importance medication history has on diagnosing drug-induced uveitis. Uveitis Uveitis is a term that refers to inflammation of a part…
According to a recent article, the author of the novel Breaking Free, Jan Rothney, shares the connections she has discovered between chronic fatigue syndrome and long covid. Chronic Fatigue Syndrome…
Rare disease research can be difficult to conduct, with one of the major contributing factors being funding. Research is expensive, and I mean really expensive. That's why grant funding and other…
According to a recent article, the family of a young boy from Australia who is diagnosed with the rare genetic disease mucopolysacchariodosis type 1 (MPS 1) is sharing his story to…
The American Academy of Neurology (AAN) held its Annual Meeting from April 22-28, 2022. During the meeting, various stakeholders discussed trends, science, and research within the field of neurology. According…
When it comes to rare diseases, many doctors simply just don't know the proper way to diagnose, monitor, and treat them. It's difficult to know how to respond to every…
According to a recent article, a storytelling and research hub has been launched by the nonprofit Good Days to create a platform for those in the chronic and rare disease…
In Detroit, activists recently came together to raise money for pancreatic cancer research through a walk called “The PanCAN PurpleStride walk.” Each year about 62,000 people are newly diagnosed with pancreatic…
Patients are advised to look for and report symptoms of a mysterious liver disease that has recently caused the death of three Indonesian children. Newsmax’s most up-to-date reports state that…
At 13 years old, Emma Woods was diagnosed with Turner syndrome, a rare chromosomal condition. Unfortunately, Turner syndrome can cause a number of health or developmental problems, such as heart…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
© 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.
