Anna is from England and recently finished her undergraduate degree. She has an interest in medicine and enjoys writing. In her spare time she likes to cook, hike, and hang out with cats.
The University Hospitals Birmingham in the UK is one of the four centres in the country to run a clinic for patients with Bardet-Biedl syndrome. They’ve recently written an article…
This weekend Patient Worthy attended RAREfest, an event held in the UK by the Cambridge Rare Disease Network. It brings together patients and their families, researchers, doctors, and the public to…
This weekend Patient Worthy attended RAREfest, an event being held in the UK by the Cambridge Rare Disease Network to raise awareness and promote discussion around rare disease issues. The…
Amy Dahm, who currently lives in Washington, DC, was working as a U.S. diplomat when she was diagnosed with Cushing’s syndrome. After receiving life-saving treatment from the National Institutes of…
Lots of people with both rare and more prevalent diseases are helped by animals, but the terms service animal, emotional support animal, and therapy animal are often misunderstood, and many…
A $1.4 million dollar donation to the University of Massachusetts Medical School will help to fund research into a gene therapy for Tay-Sachs disease as it transitions from pre-clinical to…
A recent study has looked into the use of video visits with patients by clinicians in Sweden, to try to find out how doctors decide which patients to offer them…
In a recent news article, the Northwestern Medicine Feinberg School of Medicine has shared details about an experimental device that may have the potential to dramatically improve the treatment of…
An investigational new drug for bronchopulmonary dysplasia, called CF-MEV-132, has completed pre-clinical in-vivo testing. According to The Cell Factory, who are developing the drug, the potential treatment is now ready…
In a recent news release, Moorfields Eye Hospital Dubai outlines how they effectively treated a young girl for Stevens-Johnson syndrome, a rare and chronic disease that affects the eyes. About…
In a recently shared article, the University of Southern California has announced that the United States Food and Drug Administration has approved a high-tech brain scanner at the Keck School…
According to a recent article by UMass Medical School, promising new research from scientists at UMass supports the potential of gene therapy as a treatment for amyotrophic lateral sclerosis. The…
A new study into the potential use of a tau-PET tracer for Alzheimer’s disease has produced promising results. The data was presented at the Clinical Trials on Alzheimer’s Disease Conference,…
A recently published report on neuromuscular disease care outlines the current challenges and future opportunities in diagnosis and treatment. The report, titled ‘Understanding Neuromuscular Disease Care’, was funded by the…
The first patient has been dosed in a new clinical trial of an investigational drug for idiopathic pulmonary fibrosis. The drug, called GLPG1205, is being developed by Galapagos, and you…
A study has found that daytime sleepiness and attention may be correlated in people with narcolepsy and hypersomnia, with patients who self-report feeling more sleepy also being more likely to…
A study has found that more than 80% of participants carrying genes linked to breast cancer didn’t know they had them. The research paper, called ‘Exome Sequencing-Based Screening for BRCA1/2…
Acer Therapeutics has submitted a New Drug Application to the United States Food and Drug Administration on behalf of Edsivo™, their experimental treatment for vascular Ehlers-Danlos syndrome. To find out…
A study has found that a class of drugs known as MDM2 inhibitors may have the potential to help patients with ocular inflammation uveitis, a serious condition that affects the…
Alnylam has provided updates about their programs for patients with primary hyperoxaluria type 1 (PH1), a rare condition that affects the kidneys and bladder. As part of their Alnylam Act® program,…
Late-onset Pompe disease is associated with many features, one of which is a change to the voice, which may be noticeable in speech and voice quality. To investigate how this…
The 2018 Nobel Prize for Medicine was awarded to two researchers working on checkpoint inhibitor therapies for cancer. A source article by AFP, shared by medical express, outlines how checkpoint…
A study, called ‘Prevalence of Variant Reclassification Following Hereditary Cancer Genetic Testing’, has examined how often the results of genetic testing for cancer risk are later reclassified. To read about…
An enormous anonymous donation of more than $18 million has been given to the BC Cancer Foundation to fund cutting-edge treatments. The news was announced in an article by the…
A study funded by the Lustgarten Foundation, the largest private funder of pancreatic cancer research in America, has shown promising results. The scientists are hopeful that their work could lead…
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.
