Written by George Simpson Despite nagging inflation and economic uncertainty (which could include “Will my company make layoffs in the next year? or “Will my landlord up my rent again?”)…
After years of research an international team of scientists has unraveled the genetic makeup of 47 strains of known and potential Lyme disease-causing bacteria. The work paves the way toward…
By: Harsha K Rajasimha, Ph.D., Founder and CEO of Jeeva Clinical Trials Challenges Unique to Cell and Gene Therapies (CGTx) Clinical Trials Cell and gene therapies (CGTx) have emerged as…
By Alexis Rodriguez When I was 24 years old, what started as a terrible sinus infection took a turn I never could have expected. I woke up one morning with…
Written by Carol Trager Parents of a “rare” child constantly search for answers, for direction, for hope. They collect information and advice from a variety of sources, yet they must…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Written by Mike Dobbyn “Life expectancy: Early to late teens.” It was March 20th, 2019, and I was reading my son’s obituary on my iPhone while sitting in the geneticist’s…
Written by Judith Hill, Communications and Events Director, National Alliance for Eye and Vision Research In a remarkable show of unity and commitment to eye health, the Alliance for Eye…
Contributed by Dravet Foundation Spain The group values the progress made but urges the continued implementation of the effectiveness of the drugs Epilepsy unexpectedly and suddenly marks the onset of…
Written by Martha Harlam Until 1986 I led a wonderful life. I got to sing for my supper in musicals and opera. Now, spinocerebellar ataxia was taking control of my…
Written by Rachelen Varghese I am lucky to call the Jones’ my friends. Brian Jones is a practicing nephrologist in Asheville, North Carolina who met his wife, Tia, while he…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
This opinion piece was provided by Kevin Woodward of Phoenix, Maryland. Kevin is a member of the Barth Syndrome Foundation board of directors. The role of the U.S. Food and…
There are many conditions which can be cured or at least ameliorated with a stem cell transplant or an organ transplant. But even when the right donor is available, and…
Note: This patient story was contributed by one of Patient Worthy’s partners, HAE Junior – an organization dedicated to improving the lives of children and young people living with hereditary…
Written by Diane Wilkie My hATTR story began in the mid-1960’s when my father, a healthy, strong, outdoorsy guy in his late 40’s started tripping, experiencing numbness, and having dizzy…
Contributed by Scott Gray. Scott Gray is the co-founder and CEO of Clincierge, a provider of patient support services for clinical trials. Since 2015, Clincierge patient coordinators have managed logistics and reimbursements in…
Introduction I am a 50-year-old woman from the UK who has been suffering with an undiagnosed condition for 11-years for which I am seeking a diagnosis and medical treatment. I…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
On Monday, February 12 the Food and Drug Administration approved Eohilia, a budesonide corticosteroid oral suspension for patients aged 11 years and older with eosinophilic esophagitis (EoE) patients in the…
Written by Maria Picone, TREND Community Ten years ago, my daughter was born with a rare, complex disease known as Prader-Willi syndrome (PWS). PWS is best known for causing insatiable…
Patient Worthy is excited to highlight Probably Genetic's free genetic testing program for alpha-mannosidosis. The intricate web of rare diseases often leaves individuals and their families searching for answers and…
Written by Sierra Domb What Is Visual Snow Syndrome (VSS)? Visual snow syndrome (VSS) is a neurological disorder that can impact an individual’s vision, hearing, cognition, sensory processing, and quality…
Written by Dr. Donna Nicholson Continued from Part One Content Warning: Suicide, Self-harm In the predawn hours of November 9, 1999, my husband traveled east from Arizona to New…
Written by Matt DeGooyer, Lupus Foundation of America Lupus affects over one million Americans, with around 16,000 cases being diagnosed each year. It is an autoimmune disease that causes the…
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