Happy Friday! We have an FDA approval this week for rare cancer patients! We also have the details on a hypophosphatasia fundraiser. There's also an inspiring story of of a…
Jodie Davies is no stranger to rare disease. When her daughter Tia was born with a genetic bone development disorder, she never could have expected her next child, Caleb, to…
Warm up your November by attending the LGS Foundation's 5th International Family and Professional conference on Lennox-Gastaut Syndrome in Orlando Registration prices for adults and children with LGS (includes entry into…
In general, sarcoidosis can affect various organs in the body including the lungs. Sarcoidosis causes granulomas, which are tiny masses of tissue clusters, to form. This leads to malfunctioning or…
When you hear your doctor say the C word, it feels like the whole world stops or launches into fast forward. I’ve spoken to many people who have had that…
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…
November is Pulmonary Hypertension Awareness month, and this year the Pulmonary Hypertension Association (PHA) has launched a special, nation-wide campaign to raise awareness for the disease called The Right Heart. Pulmonary…
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…
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…
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.…
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…
Come to the 31st Annual NACFC and be among 5,000 attendees, exhibitors, supporters, and staff from around the globe to learn more and talk about everything cystic fibrosis! Find out your registration fees…
Come explore Colorado while attending the annual and internationally recognized forum for training and education for Huntington disease researchers!
An ongoing clinical trial called ARROW is making advances in the treatment of people with relapsed and refractory multiple myeloma. Patients who took a dose of a drug called Kyprolis (carfilzomib)…
A recent study, published in the Journal of Neurology, Neuroscience & Psychiatry, suggests that diets heavy in fat can increase the risk of relapse in children with multiple sclerosis (MS).…
As seen by her story on IDF's website, for Kayla Kuehl, her diagnosis of an extremely rare disease happened over the course of several years. It's called Common Variable Immune Deficiency…
When is acromegaly like a scene from a movie? I know it's a stretch, but bear with me. I rarely go to the movies, you know, in a movie theater.…
ROME! Come and experience beautiful Rome as well as stimulate the exchange of ideas, form new collaborations among investigators and clinicians with different expertise, spark interest in these complex diseases among postdoctoral research…
Knowing you’re not alone and connecting with others who share the same experience with Dravet syndrome can be incredibly valuable. Parenting a child with such a specific set of symptoms…
Rare Disease family members often hear, “I don't know how you do it.” This remark usually refers to the physical and emotional aspects of the condition, but those who make…
Having a peanut allergy is nothing to sneeze at. If you are a parent with a child who has a peanut allergy, you need to be constantly vigilant. Now, a…
Popular wisdom tells us that the first step to fixing a problem is admitting that you have a problem. This works for individuals, like alcoholics, thanks to William Griffith Wilson,…
Happy Pre-Halloween Patient Worthians! October is Dwarfism Awareness Month. Not only that, MDS World Awareness Day was just two days ago! Get the deets below. We also have a story…
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