According to a story from Human Rights Watch, stories of preventable fatalities due to medical emergencies in immigrant detention centers in the U.S. have begun to emerge. In many cases,…
According to a story from Angelman Syndrome news, Angelman syndrome was recently given its own disease unique disease code: Q93.51. The new code will help make researching and tracking the…
Happy start-of-summer everyone! We're kicking off the summer with a wrap up on rare disease news this week. We have an article about a systemic mastocytosis study, and a clinical…
According to a story from apnews.com, Mike Coble, a senior at Byron High School in southeastern Minnesota, was recently diagnosed with Guillain-Barre syndrome. Mike is on three different sports teams…
According to Pulmonary Fibrosis News, a study with mice showed that a certain compound found in plants, parthenolide, is associated with a sizable reduction in lung fibrosis and the subsequent inflammatory…
According to a story from UK Healthcare, a team of researchers and scientists at UK Healthcare is preparing to start a clinical trial that will test a new therapy aimed…
According to a story from the Ottawa Sun, several hundred people participated in the annual ALS Walk on June 9th, in which people walk down the Sir John A. MacDonald…
Patient Worthy's partner The MDS Foundation will be hosting a patient forum and and their first ever awareness walk in July! The 5k will be held July 20th and the…
Saturday June 23rd is Dravet syndrome awareness day! Dravet syndrome is a rare genetic dysfunction of the brain (epileptic encephalopathy). It begins in the first year of life in an otherwise…
Today is World Sickle Cell Day! Established in 2008, this international awareness day is aimed to increase public awareness and an understanding of sickle cell diseases, while educating those who may…
The All of Us program is a huge research project set up by the National Institute of Health (NIH) that aims to collect genetic and health data from a representative…
In today's ever-changing - and downright weird - world, you'd be correct to say say (if not over-say) that technology is slowly killing us. But not in this case! Good…
June 17th is worldwide CDKL5 Awareness Day! It's our mission to give a spotlight to the rare diseases that don't often get talked about - and especially on its awareness day!…
Happy Father's Day weekend! While Father's Day can be complicated in a rare family, rare parents deserve a round of applause. This week we have a Father's Day tribute from…
According to a story from pm360online.com, the speciality pharmaceutical company Chiesi USA and the biotech company Holostem Terapie Avanzate S.r.l. of Italy recently announced that the U.S. FDA recently granted orphan…
I've known some wonderful fathers throughout my life. My own father was a gem. My siblings agree. However, it was not until I became immersed in the rare disease world…
According to a story from med.miami.edu, a team of researchers working at the Sylvester Comprehensive Cancer Center, which is part of the University of Miami School of Medicine, made a…
The below article was originally published on June 14th, 2018 in Miracle Flights Newsletter, The Co-Pilot, and is being republished here with permission. Rebecca is big sister to 10-year-old Amanda…
Click to read parts one and two of Joanie's story. Since 2012, when I left my job as an educator, I have tried many different modes of medical therapies. I'm…
I am a caregiver mom to my two special needs, young adult, rare disease kids. I am also a recent widow; previously, I was a caregiver wife to my very…
A Nigerian mother, Hafsat Aliyu has penned a moving tribute to her beautiful daughter, Zainab, who died of Hodgkin lymphoma, a type of blood cancer, on May 7, 2015. She…
Hemophilia can affect anyone. Let’s make a few things clear: Women are carriers of hemophilia and pass the gene, but men determine the child’s gender. It’s not all on you,…
According to Charcot-Marie-Tooth News, a Chinese family of five who all have the same type of Charcot-Marie-Tooth (CMT) disease share something else in common as well. Not only do they…
Before I start, I want to remind everyone that I am not your doctor or a halfway adequate replacement for your doctor. If you find that you're fainting regularly-- whether…
To read part one of Joanie's story, click here. In 2014, I developed excruciating back pain and eventually the doctors found I had two spinal cord tumors. One was on…
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