According to a story from Youth Today, the Americans with Disabilities Act (ADA) was first passed 30 years ago, in 1990. This historic law helps protect people that live with…
Scares That Care Scares That Care is a 501(c)(3) organization, first established in 2007 by Joe Ripple, dedicated to fighting the "monsters" of childhood illnesses, breast cancer, and burns. They support…
According to a story from Charcot-Marie-Tooth News, a new nonprofit organization called Shark Tooth Cycling has recently begun operations. The mission of the organization is to encourage young people in…
July 30th, 2020 is recognized as Gastroschisis Awareness Day. This event aims to help spread awareness about gastroschisis, a rare birth defect, among both the general public and within the…
According to a story from The Philadelphia Inquirer, 25 year old Gabby McNary isn't taking any risks when it comes to the coronavirus/COVID-19 pandemic. Philadelphia was hit hard by the…
According to a story from waff.com, Juliana Goode was first diagnosed with Cushing's disease in September 2018. It was an unusual case as Juliana is a teenager and the illness…
According to a story from gopresstimes.com, Lily Laurent, a 13 year old student at De Pere middle school in Wisconsin, has lived with juvenile idiopathic arthritis for nine years. While…
According to a story from msn.com, two women who were impacted by the rare disease familial chylomicronemia syndrome (FCS) have lead the charge in changing the procedures used by the…
Reprinted with permission from Findacure.org Today’s guest blog is written by Polly Moyer, Co-founder of the Action for Mal de Debarquement Syndrome UK facebook page and founder of the Familial MdDS facebook…
According to a story from theindychannel.com, brothers Elias, age eleven, and Emmett, age seven, were both born with the rare bleeding disorder hemophilia A. However, this has not stopped them…
According to a story from keloland.com, Westin Cuka, age six, was first diagnosed with neurofibromatosis, a rare disorder, three years ago. Since then, the family has traveled on multiple occasions…
At one point in his journey with cystic fibrosis, Marc Cotterill experienced a rapid loss in lung function. In fact, it dropped to just 29%. As his health worsened,…
According to a story from thv11.com, Susan Head of Little Rock, Arkansas is a marine veteran who now faces a new battle: Castleman disease. In the midst of the ongoing…
"I thought it was a hernia." When George Benson experienced lower abdominal pain in 2009, at age 51, he wasn't concerned. He was a truck driver, artist, and family…
If you've been overwhelmed by the news and are looking for a feel-good story, you've come to the right place! Five years ago, when they were just 5 years…
The Rare Diseases Clinical Research Network (RDCRN) has recently launched a survey aiming to assess the impact of COVID-19 on the rare disease patient community. This initiative is important as…
Earlier this year, The Leukemia & Lymphoma Society hosted a presentation by Dr. Eunice Wang, Clinical Leukemia Service, Professor of Oncology, Roswell Park Comprehensive Cancer Center. Dr. Wang’s presentation…
If you're like me, your life has changed immensely over the past few months. COVID-19, a novel coronavirus with 8.39 million diagnoses worldwide, has kept us inside and changed…
June 23rd, 2020 will be recognized as Dravet Syndrome Awareness Day, and June is Dravet Syndrome Awareness Month. These events are dedicated to spreading awareness about the disorder among the…
By Jodee Redmond, In the Cloud Copy The work of a pediatric oncologist isn’t for the faint of heart. All their patients are children, and the outcome isn’t always good.…
In the United States of Care, Catherine Jacobson tells her story of being born in South Korea with OCA1A albinism which caused her to be legally blind, being adopted by…
In the geographically small island nation of New Zealand, there are estimated to be as many as 300,000 people who live with various rare diseases or disorders. Unfortunately, like in…
As reported in Globe News Wire, amidst a difficult time for rare disease patients as the medical world’s refocuses on the coronavirus, a new scholarship has been announced that could…
By Danielle Bradshaw from In The Cloud Copy Cheri Tannenbaum spends her days making 1960s flower child themed clothing and it’s a style that she’s rather fond of wearing too.…
According to a story from Scleroderma News, June is recognized as Scleroderma Awareness Month. While physical distancing as a result of the ongoing coronavirus/COVID-19 pandemic may keep some folks at…
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