When most people hear about scientists messing around with genetic manipulation, they think of the antagonist of a comic book trying to make super soldiers. But, that’s not what geneticists…
As the wild, fractious year of 2016 claws it’s way to the finish line, we could really, really, REALLY use some good news. In a year that took away so…
Dear Exhausted Mom Living with Primary Immunodeficiency Disease (PI), I know how you feel. You are tired. Our worlds may feel and look similar, but I’m not living with primary…
Chronic granulomatous disease (CGD) is a genetic condition that affects the immune system. It's in the family of primary immuno-deficiencies, and makes it hard for the body to fight infections…
Sunday October 2, 2016 was the IDF Walk For Primary Immunodeficiency (PI) in Boston, MA! As a partnership between the Immune Deficiency Foundation (IDF) and Shire Pharmaceuticals, this walk began at Boston…
En julio, PatientWorthy publicó las principales noticias de ADMA Biologics, nuevo fármaco prometedor Inc.; RI-002, un tratamiento con IGIV especialidad para pacientes que están inmunocomprometidos. datos RI-002 demostraron la capacidad…
Happy Fall Friday Patient Worthians! This week we have the amazing story about a woman with dystonia. We also have a video review of a man diagnosed with CVID. Additionally,…
Happy Friday Patient Worthians! We have two intriguing stories from PW contributors this week, detailing their plight with rare disease. Additionally, we have a pretty cool outcome for a pretty cool kid…
¡NOTICIAS DE ÚLTIMA HORA! Pronto puede haber otro tratamiento para pacientes del IP! La compañía ADMA Biologics, Inc. ha desarrollado una nueva opción de tratamiento, RI-002, para los pacientes que…
The Immune Deficiency Foundation (IDF) is a fabulous resource for anyone living with primary immunodeficiencies (PI). On May 12 at 8 PM Eastern Time, the IDF will host an informative…
April is National Primary Immunodeficiency Awareness Month! So this April, join with the IDF, in partnership with World PI Week, celebrated April 22 to 29, to promote awareness of primary…
At PatientWorthy, we've talked a lot about gene therapy, but we've never really taken the time to explain it. What the heck is gene therapy? How does it work? Well, like…
A couple of months ago we took a look at the legacy of David Vetter, the “Boy in the Plastic Bubble” whose lifelong battle with Severe Combined Immunodeficiency (SCID) caught…
Mary Vicencia knows what it’s like to be sick as a dog. For a while, she was basically an expert in feeling downright bad. In fact, she’s a lot like…
There really ought to be a Walk of Fame for people who have rare diseases. Possible categories might be: “Number of Misdiagnoses I Survived” or “Number of Doctors Who Thought…
Brothers Michael, 6, and Dylan Cavalier, 4, aren’t exactly like other boys. They don’t make mud pies; they don’t jump in piles of autumn leaves; and they certainly don’t dig…
Amanda and Emily Gale are twin sisters who have never let primary immunodeficiency diseases (PI) stop them from achieving at the highest levels--literally. As reported on the Immune Deficiency Foundation's…
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…
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,…
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
