Eosinophilic Esophagitis (EoE) Eosinophilic esophagitis (EoE) is a rare and chronic disorder which affects the digestive system. Eosinophils are a type of white blood cell that help fight infections. This…
Chronic Kidney Disease Chronic kidney disease (CKD) is a rare condition which is defined as lasting and progressive kidney damage. The kidneys are responsible for filtering waste and fluids from…
Adapting to a long- term health condition, is not an easy road to be on. There are many phases we go through during our journey from denial to acceptance. It…
From Friday, June 7th to Sunday, June 9th, 2019, I had the privilege of attending the 2019 International Waldenstrom's Macroglobulinemia Foundation Educational Forum. This year, the annual event was held…
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The California Institute for Regenerative Medicine (CIRM) has funded a study by a company called Forty Seven, Inc. The clinical trial is investigating the benefits of a drug therapy for two cancers…
According to a story from Global Genes, the drug developer SpringWorks Therapeutics announced that the US Food and Drug Administration (FDA) has granted the company Fast Track Designation for its…
Meet 29 year-old Cary Velazquez -- make-up artist in Puerto Rico with the rare disease osteogenesis imperfecta (OI), (also known as “brittle bone disease” and “glass bones disease”) who has…
IPain The International Pain Foundation (IPain) is a nonprofit organization dedicated to supporting those with chronic pain due to neurological, musculoskeletal, inflammatory, degenerative, and emotional conditions. They aim to improve…
According to a story from ucf.edu, a new partnership between Mayo Clinic and Limbitless Solutions is planning initiate a new clinical trial that aims to improve mobility options for patients…
According to a story from vtnews.vt.edu, a research team at Virginia Tech has made a critical discovery about the origins of Lyme arthritis, a painful and debilitating symptom that among…
Emily Ventura has never met in-person another person living with progressive familial intrahepatic cholestasis (PFIC), her daughter’s life-threatening ultra-rare genetic disease. That will change on June 21st when Emily and…
According to a story from The Washington Post, Enrique Galvan has been subjected to relentless bullying and rejection ever since he first started school. The reason why? He was diagnosed…
According to a story from findmecure.com, an often overlooked subject for many rare, chronic conditions is the impact that these long term illnesses can have on a patient's sex life.…
According to a story from Medical Xpress, new discoveries are revealing more and more about how the population of bacteria in our digestive system, known as the gut microbiome, can…
Happy Thursday! Today, we're highlighting stories on three patients facing different struggles: a professor, a Jeopardy host, and a man from New Jersey. We also have an article about a…
According to a story from Charcot-Marie-Tooth News, a team of scientists have successfully identified four new mutations that are capable of causing Charcot-Marie-Tooth disease. These mutations affect the GJB1 gene. These new…
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Fifty years ago, the air base in Ho Chi Minh City, formerly Saigon, was the world’s busiest airport. The base is now surrounded by four neighborhoods with about 111,000…
According to a story from globenewswire.com, the biopharmaceutical company Denali Therapeutics, Inc. has recently announced that its experimental product candidate DNL310, which is currently being developed as a treatment for…
On the weekend of June 7th through 9th, I had the privilege of attending the 2019 International Waldenstrom's Macroglobulinemia Foundation's Annual Educational Forum in Philadelphia, Pennsylvania on the behalf of…
According to a publication from BioPortfolio, China's National Medical Products Administration (NMPA — similar to the American FDA) recently approved BioMarin's mucopolysaccharidosis type IVA drug Vimizim for use in the…
According to a story from Alabama News Center, a scientist affiliated with Southern Research, Dr. Rita Cowell, has been hard at work researching new potential treatments for amyotrophic lateral sclerosis,…
Answer: This iconic game show host - who was diagnosed with stage 4 pancreatic cancer earlier this year - has miraculously overcome the odds, announcing he is in "near remission."…
At the 2019 American Thoracic Society Conference this year multiple presentations demonstrated the importance of the Pulmonary Fibrosis Foundation's Patient Registry. About the Registry This registry was created by the Pulmonary…
According to a story from Business Wire, the biopharmaceutical company X4 Pharmaceuticals, Inc. and the medical genetics company Invitae Corporation have recently announced that they have come into a parternship…
According to a story from globenewswire.com, the biopharmaceutical company ContraVir Pharmaceuticals, Inc. has recently announced that its experimental drug CRV431 was able to successfully decrease scarring of the liver in…
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