In case you didn’t know, October 11-17, 2015 marks the third anniversary of commemorating International Plasma Awareness Week. Sure, you might think that it’s just another ho-hum “awareness week” but…
For many people suffering from rare diseases, gene therapy offers the hope for relief and perhaps a cure for their particular condition. But while many studies are underway, to date, few drugs have…
Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…
For those of us who grew up in the 1970s and 1980s, the phrase “Bubble Boy” zaps us right back to a sharp mental image that will always stick with…
Ellicott City, Maryland | President Marcia Boyle has spent decades advocating for people with immune deficiencies. Her own son was diagnosed more than 30 years ago when he was an…
In this account, from Philly.com, Dr. Thomas Klein, allergist and immunologist, describes his problem. A mystery had come across his path that he didn't think he could solve. He was seeing…
Candace gathered her cards, launched "Oceans" in the background, and pressed play as she began to record a video explanation of her rare, frequently misunderstood disease, Common Variable Immune Deficiency…
I'm Charlie, a 27 year old working in digital marketing in Auckland, NZ. I'm a big fan of good coffee, good beer, good wine, good food - and lots of it! I…
In July, Patient Worthy published BREAKING news about ADMA Biologics, Inc.'s promising new drug; RI-002, a specialty IGIV treatment for patients who are immune-compromised. RI-002 data proved the drug's ability to prevent…
C’mon needlephobes—you know who you are! Every family has one—and it’s okay. Breathe… Whether or not you or your loved one is a die-hard needlephobe, you’re probably not reading this…
Autoimmune diseases: Can't live with 'em; can't cure 'em... which is unfortunate when according to The Children's Hospital of Philadelphia, seven to 10 percent of the population in the Western…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] 5 Ways Your Butt Can Save a Life If you thought your jeans were only…
Denim is a lot of things—it’s versatile, it’s comfortable, and with the right cut, it’s great for your butt. But is denim really life-changing? Thanks to Jeans for Genes Day,…
Grab your mask and cape because superheroes are keeping the hope alive for Jonah Aregood, a nine-year-old Common Variable Immune Deficiency (CVID) patient. Hometownstations.com reports a local comic book store…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] 5 Reasons Why Sticking Yourself With a Needle Will Make You Smile Everyone hates needles,…
How much do you hate having to watch your common variable immune deficiency (CVID) child infuse? It’s heart wrenching, not to mention, exhausting dealing with the push back from children who…
If you’re one of the estimated 1 in 25,000 to 50,000 people in the U.S. living with common variable immunodeficiency (CVID), regular IV injections are a fact of life. Because…
Immunodeficiency’s can cause weight gain. That’s no secret. But oftentimes, Common Variable Immunodeficiency (CVID) patients are surprised when they begin gaining weight. CVID is characterized by low antibody levels and…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Move Over Barbie. This is the Model Little Girls Should Idolize In this interview ankylosing…
BREAKING NEWS! There may soon be another treatment for PI patients! The company ADMA Biologics, Inc. has developed a new treatment option, RI-002, for patients who are immune-compromised. It’s currently…
Do you know who Maree McRae is? If you don't, read her in-depth interview featured on HollywoodtheWriteWay.com. Or, for all you lazies, here are the bullet points: McRae is a singer/songwriter who…
Kathy Antilla recalls the moment she heard her son, Issac, say those words she thought she'd never hear: "Mom! Look at me! I'm just like a normal kid now." In…
Olivia Trueb lives every teenage girl's dream. As in, she’s got a team of professional football players that are wrapped around her finger, and much to her surprise, she can…
Mangled finger? Severe bone bruise? Broken back? Nope, this isn’t a catalog of injuries from Fight Club—these are some real injuries the Miami Herald describes that now 21 year old…
It’s not often that rare diseases cross with pop culture, but when they do, it’s worth tuning in. This summer, Lifetime Television show, “The Balancing Act,” featured an educational episode…
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