Common variable immunodeficiency, or CVID, is anything but common; it affects about 1 in 20,000 people. It is, however, characterized by a deficient immune system and can present a wide variety…
Hey, do you love bike riding? Competitively or otherwise? And are you going to be in the Philly area around May 7th? Then you should consider taking part in the…
We all know the saying: April showers bring May flowers. But did you know that April sharing brings May caring? May is Vasculitis Awareness Month, and the Vasculitis Foundation has…
What the heck is a nanoparticle? It sounds very Twilight Zone-ish, and in some ways, nanoparticles are just that. The thing is, nanoparticles are the movers and shakers of the biologic…
Alright, folks: Get out your calendars! Or more appropriately, pull up your calendar on your phone! Now, go to May 22nd. It's a Sunday. How does your day look? Free?…
Behçet’s disease. If you’ve never heard of it, it’s a disease that causes blood vessel inflammation. If you have heard of it—or actually have Behçet’s—you’re probably well aware of the resulting…
Ever heard that blood is thicker than water? Not only am I sure the National Hemophilia Foundation (NHF) has heard it—they’re essentially creating a movement around it. And it’s pretty…
HEY KIDS! Are you tired of people not knowing about primary immunodeficiency? Take these 3 steps to teach others what PI means to you: First, THINK ZEBRA! What does that…
Most researchers like to say that their work is “groundbreaking” or “revolutionary.” And most reporters—whether print or digital—like to use those words too, because they help get people’s attention. But…
I have lost two cousins and a very inspiring friend to idiopathic pulmonary fibrosis (IPF). So I’m very aware that: There’s a genetic component to the disease (if more than…
Are you one of the estimated four million people in the U.S. living with Sjögren’s syndrome? Are you going to be in the Seattle area between April 8th and 9th?…
Lace up those walking shoes—even if you’re “walking” is really “wheeling” in your wheelchair and go call all your aunties, uncles, friends, and complete strangers for their pledge of support:…
Are you available on May 14, 2016? Are you going to be in Jacksonville, Florida? If you answered a double "Yes!" get ready to make a difference in the lives of…
In December 2015, the U.S. Food and Drug Administration approved Uptravi (selexipag) for the treatment of pulmonary arterial hypertension (or PAH). Now, others around the world will have the same…
Vitae Pharmaceuticals Announces Positive Top-Line Results From Initial Phase 1 Study of First-in-Class RORyt Inhibitor VTP-43742 in Autoimmune Disorders back in September. Vitae Pharmaceuticals, Inc. (“Vitae”) is developing VTP-43742 for…
Wake up, Narcolepsy! When runners leave the starting line in Hopkinton, MA, for this year's Boston Marathon, the pack will contain some extra motivated individuals. TeamWUN will once again sponsor "wunners"…
Michael J. Fox Foundation Announces New Research Initiative for Pharmacodynamic (PD) Biomarker Like many other diseases such as Lyme disease, there is no current, easily measured bio-marker for Parkinson’s. Without…
Post Rare Disease Day 2016 the FDA's Office of Special Medical Programs announced a new program that would work to provide funding to patient advocacy groups and other organizations who were studying…
I have two sisters, each with the remarkable talent to walk into a thrift store with only a few bucks and walk out with a brand new wardrobe. Growing up in…
I first wrote about Julie Flygare back in 2015 and it’s awesome to hear that she’s as committed as ever to advancing the cause of raising awareness about narcolepsy. I got the recent scoop…
Part 2- A Patients’ Perspective on Healthcare in America-The Ridiculous: That Time When a Revolutionary Act got Lost in the Senate. In July of 2015, the House of Representatives passed…
Part 1- A Patients’ Perspective on Healthcare in America-The Good and the Bad Patient State of Union Lisa D recently spent the week in Washington, DC listening to some staggering statistics…
Complex regional pain syndrome (CRPS) is a condition characterized by prolonged or excessive pain together with changes in skin color, temperature, and/or swelling in the affected area that can be…
Study Title: Phase 2, Randomized, Double-Blind, Placebo-Controlled, Parallel-Group Study of N91115 to Evaluate Efficacy and Safety in Patients With Cystic Fibrosis Who Are Homozygous for the F508del-CFTR Mutation Treated With…
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