We've heard a lot about the biology behind Zika's causes of microcephaly but haven't heard a lot about the patients themselves. Keegan and Corey Kistenmacher had their daughter Cassidy on…
There are an estimated 7,000 rare diseases and each one takes its toll. The effects aren't just felt by the person with the condition, but also on those who care…
Lung Cancer Awareness Month started with a bang at the Press Conference and Panel Discussions today in the Holeman Lounge of the National Press Club. Two panels of renowned lung…
Good news for mantle cell lymphoma patients! A new treatment called Calquence has just received approval from the U.S. Food and Drug Administration (FDA) for adults who suffer from this rare…
As parents, we want to protect our children from harm and keep them safe. So when your child is suffering from a rare metabolic disorder, it's natural to feel helpless.…
Rare disease research can be daunting. It's much more difficult for rare, or orphan, diseases to find adequate funding to develop treatments than it is for diseases that have larger…
Every year, families travel across town and from around the country to be together for the holidays. This year, while you're sharing pumpkin pie and Black Friday Sale flyers, take…
Puberty, development, and menopause - most parents have found that explaining these concepts to kids, though entirely natural and unavoidable, comes with a certain degree of discomfort. In girls in…
The Alpha-1 Foundation has a website dedicated to Alpha-1 patients and caregivers. It offers a wealth of information and resources about about the disease. Alpha-1 Antitrypsin Deficiency (Alpha-1) is a…
Nothing puts "fun" in a fundraiser than holding that event at Walt Disney World. For the past 25 years, Disney has hosted an annual marathon to help support hundreds of…
Severe diarrhea. Daily abdominal pain. Extremely high triglycerides. Chronic pancreatitis. Joint pain. Incredibly uncomfortable conditions for anyone. Now imagine you’ve experienced this pain your entire life without knowing what was…
Abi Galatia suffers from stage three osteosarcoma, a very rare and very deadly form of bone cancer. The weird part is, she dreamed that she would get the disease for…
Happy Friday! We have some great news for the short bowel syndrome community. We also have info on a PBS doc you won't want to miss. One of our contributors…
Let's take a trip to West Yorkshire, England, where a rare disease story is unfolding in the intense world of rugby. Rob Burrow is a retired English professor turned rugby…
Indianapolis is known for its speedway, but this weekend, scientists, physicians and advocates for advancements in cystic fibrosis (CF) therapies are gathering there for the 31st Annual North American Cystic…
Up until now, diagnosing ovarian cancer hasn't been so easy. Most of the time, it goes undiagnosed until it's already advanced. At that point, treatment is harder and less reliable.…
Dogs, with their pure hearts and boundless supply of affection, have made life better for humans for a long time. Dogs aren't just making people feel better by giving them…
Familial partial lipodystrophy (FPL) is a rare genetic disorder that causes fat cells to die off. This makes people with this disorder suffer from the progressive loss of body fat. At…
Getting a cold or flu is bad enough for most "healthy" people, but if you have a progressive, incurable lung disease, such as idiopathic pulmonary fibrosis (IPF), cystic fibrosis, COPD,…
A Futurism article this week put into very human terms the ongoing question we face when it comes to rare disease treatment and Pharma: What is the cost of life?…
Sometimes patients receive the hard-hitting news of short life expectancies. What happens when a doctor tells you you won't make it to adulthood? What becomes your life priority? Sometimes, however,…
A new book was just released called “Nasty Women: Feminism, Resistance, and Revolution in Trump’s America,” a collection of essay's written by empowered women speaking out against life in Trumpland.…
Painters, photographers, sculptors, and visual artists that defy categorization, take note! The EveryLife Foundation for Rare Diseases' Rare Artist Contest is back, for the ninth year in a row. The…
Many individuals living with hemochromatosis can lead normal, healthy lives. Most people living with the condition have the same life expectancy than those without. However, it's important to know some fast…
I love Thanksgiving! It's a great time to catch up with friends and family. The one drawback is my diet is strictly controlled due to my rare disease, so at…
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