My name is Stephanie. I am Tristan's older sister and a Registered Nurse. I spend a lot of time with him as he requires nursing care around the clock. I…
Getting dressed is one of the first things we do every day. And besides keeping up with fashion, or making sure an outfit is coordinated, most of us probably don’t…
26-year-old Ilka Brühl of Germany was born with ectodermal dysplasia, a group of genetic disorders that involve a facial cleft and overgrown airways, defects of the hair, nails, teeth, skin and…
A website called CrowdMed is changing the way patients can be diagnosed. It uses a group of people to collectively analyse challenging medical cases through ‘crowd wisdom.’ A TedMed talk…
Springtime is in full bloom and summer is right around the corner, so you know what that means? Beaches, barbecues, and bugs! While beaches and barbecues are fun, the last…
As a society, we're always watching SOMETHING. Television, smartphones, tablets, smart watches, computers - we're always glued to some form of media, so it's always nice when the people we…
This blog post was originally published on the KIF1A blog. We are republishing it here on Patient Worthy with permission. I was recently asked if I was confident that a…
According to a story from Healthline, a daily regimen of baking soda consumption could help reduce the severity of inflammation in certain diseases, such as chronic kidney disease and rheumatoid…
According to a story from the Chillicothe Gazette, twelve-year-old Brooke Hopkins has already had to face chronic inflammatory demyelinating polyneuropathy and a devastating injury in her young life. However, through…
Say It Out Loud: There Is No Shame in Mental Illness. These are important words that every child, teen, and adult should hear! May is Mental Health Awareness Month, with…
According to a story from Rare Disease Report, a recent study indicates that the self-administration of Berinert, a drug used to treat hereditary angioedema, is effective and safe for patients…
According to a story from Rare Disease Report, the pharmaceutical company Alnylam Pharmaceuticals announced the results of Phase 3 trials for its experimental drug patisiran. The drug is in the…
National Nurses Week begins each year on May 6th and ends on May 12th, Florence Nightingale's birthday. Think about it... every time you visit a doctor's office or hospital, you…
According to a story from curetoday.com, the U.S. FDA has recently approved the CAR-T cell treatment Kymriah for adult patients with diffuse large B-cell lymphoma in cases of relapse or…
According to a story from Rare Revolution Magazine, Georgia Hart was first diagnosed with Friedrich's ataxia when she was 15 years old. Since then, living with this rare disease has…
Duchenne Muscular Dystrophy (DMD) is the most common type of the 9 types of muscular dystrophy. It is a genetic disorder that causes muscle degeneration and weakness. It is a progressive…
On February 13th, the U.S. FDA announced the approval of Symdeko, a novel combination of two previously used agents to treat cystic fibrosis (CF). Symdeko combines a drug that has been…
According to a story from BioSpace, the pharmaceutical company Scholar Rock recently announced that its drug candidate SRK-015 was recently granted Orphan Drug Designation by the U.S. FDA. The drug…
May the fourth be with you! This week we're spotlighting four patient stories: one about a father whose daughter has Sanfilippo syndrome, one about losing your spouse to CF, the…
According to a story from the Rare Disease Report, the results of a recent survey questionnaire indicate that communicating with other rare disease patients can cause a significant improvement in…
According to a story from Newswise, neurosurgeons at UC San Diego Health can now provide patients with an auditory brainstem implant (ABI) that can preserve some degree of hearing in…
A condition called XLHED that was thought to be incurable has been treated, and a paper describing the procedure, which can be found here, was released on the 26th April…
Narcolepsy is a rare disease subject to many misperceptions and false assumptions. All of that misinformation belies the fact that narcolepsy is a serious neurological disorder, with symptoms that can…
According to a story from bioportfolio.com, a recent study has demonstrated the effectiveness of Trelegy Ellipta, a unique three component combination treatment, in reducing the effects of chronic obstructive pulmonary…
Every year, May 20th is celebrated as International Clinical Trials Day. On this day organizations that are involved in the fields of science and medicine hold events to promote education…
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