According to a story from news-medical.net, researchers working with the Institute for Experimental Pediatric Endocrinology of the Charité - Universitätsmedizin Berlin were able to successfully treat young patients that were obese…
International Clinical Trials Day #ClinicalTrialsDay #BecomeAWARE May 20th, 2018 International Clinical Trials Day is celebrated every year on May 20th. Communities use the day to remember the efforts of study volunteers…
As someone who has suffered with chronic vertigo for the past year and a half, and who deals with a chronic vestibular condition, I know all too well how debilitating…
Happy Friday, everybody! This week we're highlighting a celebration of rare moms, thoughts on the value of prayer in the rare community, and a PBC patient offering guidance on how…
The hemoglobin A1C test is a test that is commonly used to determine if patients have diabetes. A study last year in February 2017, by the American Medical Association found…
New research is showing that patients sometimes use crowdfund websites to pay for fake stem cell transplants and other dubious medical procedures, according to a story from medicalxpress.com. Crowdfunding websites…
According to a story from CTV News, Triss Hunter is a junior at Ecole Mission Senior Secondary School in the Fraser Valley. This year, she is not being permitted to…
PBCers Organization hosts the 2018 PBC Conference to connect, learn and empower. The event is catered to patients, and their family and friends to educate through medical speakers. Registration fees:…
Whenever a rare disease family is in crisis, which happens all too frequently, the request for prayers goes out to others, knowing that the response will bring about comfort. Rare…
In data presented earlier this month in San Diego at the 2017 American College of Rheumatology Annual Meeting, researchers noted that female patients with psoriatic arthritis had significantly higher rates of…
Patients with juvenile idiopathic arthritis (JIA) who used a program to receive health education and help in taking the lead in their own disease management is winning praises for its…
In a press release, CURE Media Group announced the development of a 13-part series on carcinoid syndrome. A series of discussions involving both doctors and patients educating patients, caregivers and…
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…
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…
May is Lyme disease awareness month. Responding to an explosion in Lyme disease and tick-borne illnesses, the Tick-Borne Disease Working Group met for the first time in Washington, D.C. in December…
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…
“Rare Diseases 360° – Collaborative Strategies to Leave No-One Behind” This event will be the largest rare disease themed conference in Europe. The conference will touch on a variety of…
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…
According to a story from PR Newswire, a group of scientists have managed to discover a mechanism that allows the liver to repair damage it has sustained. This discovery may…
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…
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…
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