According to a story from eurekalert.org, the first patient that received treatment with alipogene tiparovovec reported positive results after an eighteen month treatment period. Alipogene tiparovovec is a gene therapy…
According to a story from Ankylosing Spondylitis News, treatment of chronic pain is always a difficult task for health care professionals. Patients with ankylosing spondylitis (AS) are especially prone to…
A popular book by Dr. Seuss that is often given to graduates is Oh the Places You'll Go. Now, suppose Dr. Seuss had entered the rare disease world. Perhaps he…
Happy Pre-Mother's Day Everybody! This week we're spotlighting four articles from or about members of the rare community. We have a tribute to nurses from a rare mom recognizing their…
According to a story from Sickle Cell Anemia News, the St. Jude Children's Research Hospital just received $1 million in grant funding from The Links Foundation, which is one of…
According to a story from Newshub, Freda Evans learned early on that there were no treatments covered under the New Zealand health care system to treat her Pompe disease. Freda…
The hashtag #hotpersoninawheelchair went viral after the Youtuber and activist Annie Segarra used it as a response to an offensive tweet by Ken Jennings, reports The Guardian. Jennings, best known…
According to a story from Newswise, almost 500 infants that were born with congenital hyperinsulinism were treated with surgery that involved the removal of either part of or the entirety…
According to a story from the National Hemophilia Foundation, a collaborative team of researchers from the U.S. and Sweden recently announced the results of a study the indicated that a…
According to a story from Newswise, the Seaver Autism Center for Research and Treatment at Mount Sinai recently announced that patient enrollment has begun for a clinical trial that will…
According to a story from The Jerusalem Post, the medical research of professor Marcelle Machluf has been a subject of controversy from the beginning. Her research led to the nano…
I have always had a gusto for life. Big dreams. Grand ideas. Strong and independent with a will to fight for what I want. And while I’ve had my share…
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…
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