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…
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 perfectly coifed woman-child cuts you off on the way to the YMCA. Your children are copping some major attitude. Your spouse forgets to grab milk for dinner. Do you…
If you or someone you love has Cushing Disease (often confused with the umbrella term, Cushing Syndrome), you've probably heard about microadenas. Microadenas are the tiny, benign tumors that develop…
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).…
Some diseases are so rare that it feels like researchers have given up on finding a cure. So was the case with Mucopolysaccharidos 1 (MPS I) and one such young…
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.…
According to Global Genes' Rare Daily, Alexi’s mother always knew her child was different. It would take almost nine years to find the proper ADNP diagnosis, but Alexi’s mother never gave…
It is Patient Worthy’s pleasure to report on the first International Acromegaly conference which brought together acromegaly support groups from East and West Canada,- The Vancouver and Atlantic Acromegaly support…
New findings are coming from a recent study led by researchers at the Journal of the American Medical Association (JAMA) that could have long-term implications for Zika Virus research. Evidence showed that…
Si usted o alguien que usted conoce tiene síndrome de Ehlers-Danlos (EDS), usted probablemente sabe mucho sobre él, que te hace parte de un grupo muy pequeño. No mucha gente…
There is support out there for people living with and/or affected by Waldenstrom macroglobulinemia (WM). Thankfully, according to Patient Worthy Partner International Waldenstrom’s Macroglobulinemia Foundation (IWMF,) a gap may be bridged…
Health scientists at the University of Leicester and University of Nottingham have heralded the discovery of a gene associated with lung fibrosis, such as idiopathic pulmonary fibrosis (IPF), as "a…
Cystic fibrosis while still rare, is one of the world’s most common genetic disorders. There are more than 30,000 people in the United States that live with cystic fibrosis. Patients…
Presage Biosciences will be receiving its first grant from The Mark Foundation for Cancer Research, a brand new nonprofit organization. Presage developed something called CIVO, which is a drug-development platform.…
It's not every day that you hear about how nicotine may help lung disease. However, researchers at The Ohio State Wexner Medical Center are asking this question. They're testing whether…
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…
I know many people who would love to go to a local support group, but there either isn’t one in your area or you are not well enough to attend.…
What can one little boy and his family do to fight a rapidly debilitating and (currently) incurable disease such as Duchenne muscular dystrophy? A lot. The diagnosis of a loved…
We constantly hear about cancer deaths, but every once and a while, we hear the rare cases of cancer survivors. Linda VanDershaaf is one such survivor and today she is…
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…
According to a press release put out by PTC Therapeutics, Inc., the Office of Drug Evaluation of the Food and Drug Administration on Wednesday, Oct. 25th, 2017, sent a complete…
Another free event for MDS patients and caregivers is being held by the MDS Foundation! When: Saturday, November 18, 2017, 9:30 am-2:00 pm Presenters: Courtyard by Marriott San Antonio Medical Center…
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