Meghan Rourke saw the need for more open conversations about chronic illnesses, sparking her to write The Invisible Kingdom: Reimaging Chronic Illness. In an excerpt from her novel, she shares…
According to a recent article, a 6(b) study of pharmacy benefit managers and anticompetitive business practices was approved by the Federal Trade Commission following pressure from the NCPA. The Study…
According to a recent article, popular Filipina television host, also known as the Philippines' “Queen of all Media," has been diagnosed with Churg-Strauss Syndrome. Churg-Strauss Syndrome Churg-Strauss syndrome, or eosinophilic…
According to a recent article, scientists were able to create cilia-free stem cells that may help in finding the causes of cilia-linked illnesses such as polycystic kidney disease. …
According to a recent article, various tick species carrying dangerous pathogens are spreading across the United States, making it more important to know how to keep yourself safe. Tick-Borne Diseases…
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…
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…
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…
According to a recent article, the parents of Anyiah Johnson are working to raise awareness for their daughter’s rare diagnosis of autoimmune encephalitis. Autoimmune Encephalitis Autoimmune encephalitis (AE) is a…
According to a recent article, 82-year-old Veronica Jones is working to break the laziness stigma that surrounds a myalgic encephalomyelitis diagnosis. Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Myalgic encephalomyelitis (ME),…
According to a recent article, 17-year-old Diego Ramirez was able to compete in the Flying Pig Marathon despite his Duchenne muscular dystrophy diagnosis. Duchenne Muscular Dystrophy (DMD) Duchenne muscular dystrophy…
According to a recent article, a man in Maine has died after being bit by a tick and contracting the rare Powassan virus from the bite. Powassan Virus Powassan virus…
A recent article highlighted the struggles of a man in South Yorkshire who has lost multiple jobs due to his diagnosis of cyclical vomiting syndrome (CVS). Cyclical Vomiting Syndrome (CVS)…
According to a recent article, the trial studying the success of CLR 131 to treat Waldenstrom’s macroglobulinemia has shown promising results, allowing it to continue. Waldenstrom Macroglobulinemia (WM) Waldenstrom macroglobulinemia…
According to a recent article, medical professionals are urging people to be careful and avoid tick bites as May is Lyme Disease Awareness Month. Lyme Disease Lyme disease is a…
According to a recent article, Krishnansu S. Tewari, MD, discussed using bevacizumab, niraparib, and olaparib in patients who have received and completed chemotherapy for their advanced ovarian cancer. Ovarian Cancer…
A recent article emphasized the importance of recognizing symptoms that may mean you have meningitis, including headaches. Meningitis Meningitis is an inflammation of the fluid and membranes (meninges) surrounding your…
Recently, an international group of pediatric rheumatologists and nephrologists met and created a consensus on a standard for a steroid-dosing regimen to treat childhood-onset systemic lupus erythematosus with proliferative lupus…
According to a recent article, the sudden death of Cavan woman, Leah Farrelly, shocked her family, friends, and community after living with Long QT syndrome for 9 years. Long QT…
A recent article shared the story of a woman diagnosed with cystinuria whose life was saved after her younger brother donated one of his kidneys. Cystinuria Cystinuria is a rare…
According to a recent article, although some perspiration is normal to have, if you are having regular episodes of excessive sweating it could be the sign of something more serious.…
According to a recent article, a new study shows that granulomatosis with polyangiitis (GPA) and tuberculosis might have shared features, making diagnosis more difficult. Granulomatosis with Polyangiitis (GPA) Granulomatosis with…
According to a recent article, at the American Academy of Neurology annual meeting in 2022, the importance of disease-modifying therapies for patients diagnosed with rare pediatric disorders was highlighted. Lisa…
Recently, an article highlighted one man’s life journey after being diagnosed with rare cervical dystonia. Dystonia Dystonia is a chronic movement disorder, existing in the same family as the more…
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.
