In April 2022, Dr. Adrián Alambiaga successfully defended his doctoral thesis at CEU Cardenal Herrera University. His thesis centered around the exploration of progesterone as a way to stop cell…
Eric Miller was diagnosed with Lyme carditis, which is a very rare complication that can arise from Lyme disease. He is a 43-year-old who works at a boarding school in…
According to a press release that can be found on AP News, new data have been released on a potential treatment - called NVG-111 - for both mantle cell lymphoma…
Rhiley Fitch just turned five years old on May 10th. She is diagnosed with a condition called apraxia, which is a rare motor speech disorder. Rhiley is determined to learn…
On January 9th, Jacob Wiley was preparing to see his three-year-old daughter Adelaide in the hospital. It was a day that Jacob and his wife Ashley will never forget.…
Action CIND is a charity which strives to raise awareness for chronic immunological and neurological, or CIND, diseases. The organization was founded by Alison Rae, who lives with myalgic encephalomyelitis…
In Part 1 of our interview, we discussed Katharina's story, her diagnostic journey to Adult-Onset Still's Disease, and why she was driven to found Perrarus. For Part 2, we will…
Altogether, there are multiple subtypes of spinal muscular atrophy (SMA), a rare genetic disorder causing muscle weakness and generation. Four months ago, Aniya Porter was born with type I, a…
The Bausch + Lomb Corporation has just released new findings from a survey of retina specialists. Their goal was to understand the need for some type of new treatment for…
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…
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