The Bio Patient and Health Advocacy Summit of 2019 was recently held in Washington D.C. One of the panels addressed patient engagement with the FDA and how patients, advocates, families, and organizations…
Web-based Rare Chronic Illness Support Group 2nd Thursday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Cara Oppegard, MSW intern To…
According to a story from Pulmonary Advisor, the rare condition pulmonary arterial hypertension (PAH) is mostly known for the impacts that it can have on the lungs and on the…
According to a story from metro.co.uk, Harley Bond was three years old when he was first diagnosed with Sanfilippo syndrome type B, a rare progressive genetic disorder. Now five years…
According to a story from the Malvern Daily Record, the biotechnology company Exelixis, Inc. has recently announced that its partner company Ipsen BioPharmaceuticals Canada Inc. has had its drug cabozantinib…
The All in 1 iPain Summit Los Angeles, CA #GetOnTrack This conference is dedicated to patients that are dealing with chronic, long term pain. This event will inform attendees about…
Nobody expects a shocking diagnosis for their significant other right before one of the most important days of their lives. Ariona Kryeziu's life was altered significantly when her fiancee, 20-year-old…
This year, Patient Worthy will have the privilege to cover one of the planet's foremost patient centered events on chronic pain: The International Pain Summit, which will be held from…
According to an article from The Plymouth Herald, Miriam, a 9-year-old from Yelverton, U.K., has been nominated for CBBC's Big Heart Award for the care she has provided to her…
Geisinger was founded by Abigail Geisinger over 100 years ago. It now has 13 hospitals and 2 research centers. They just released a new study examining the severity of symptoms…
According to a story from The Times of Israel, Jenni Kleinman Berebitsky died the past August at age 43 due to complications of amyotrophic lateral sclerosis (ALS). The woman was…
Web-based Living Mindfully With Chronic Illness Support Group 2nd Tuesday of each month This is a support group for rare disease patients dealing with chronic illness who are seeking to…
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About one to three million people in the United States are living with postural orthostatic tachycardia syndrome (POTS). The disease affects one in one hundred teens and is more common…
Note: The author does hold immense compassion for children and teens and their families living with rare disease. Compassion is empathetic in sorrow, rather than wishing there is no sorrow,…
According to a posting from clinicaltrials.gov, an observational study will be focused on the identification of biomarkers for pediatric congenital heart disease and pulmonary arterial hypertension. Biomarkers derived from the…
According to a story from the US Food and Drug Administration (FDA), Dr. Amy Abernethy, who is the current Prinicipal Deputy Commissioner at the agency, was eager to start working…
According to a story from STV News, Aaron Hunter, who is nine years old and was born with the rare condition ROHHAD, recently earned the Good Morning Britain Young Fundraiser…
According to a story from theage.com.au, a remarkable turn of fate would bring together two women who would have otherwise never known each other---and save both of their lives in…
According to a story from PR Newswire, the National Institutes of Health (NIH) and Three Lakes Partners have awarded a grant to the tune of $22 million to the Pulmonary…
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Stéphanie Tomé is an investigator at the Sorbonne Université in Paris, France. A recent article in PacBio describes Tomé’s research into a disease that becomes progressively worse with each generation.…
Elena Frid is neurologist and Lyme disease specialist. She lives in New York City. After opening her neurology practice in Manhattan, she quickly became aware of some huge issues many…
Firdapse, or amifampridine phosphate, is a medication currently approved for Lambert-Eaton myasthenic syndrome, or LEMS. However, Catalyst Pharmaceuticals has been working to evaluate if it can aid other neurological and…
According to a story from Mirror Online, 29 year old Jessica Walton of Cambridgeshire, England, was first diagnosed with the rare disease intracranial hypertension four years ago. Since then, her…
According to a story from Medscape, the drug burosumab (marketed as Crysvita) demonstrated its ability to provide long term benefits for nearly two years to patients with the rare disease…
Rare Chronic Illness Support Group 2nd Friday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Carrie Pope, MSW, LICSW To sign…
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