Joy Littlesunday is just one of many Navajo newborns who were screened and thus saved from severe combined immunodeficiency by a successful bone marrow transplant at UC San Francisco, reported UCSF…
Severe combined immunodeficinct (SCID) is a rough diagnosis, that leaves the immune system of a patient at high risk for serious infections. Orchard Therapeutics wants to develop a treatment SCID…
At some point in the past, we decided that it would be important to divide things up when we study them in school. For a long time, all science was…
Primary Immunodeficiency (PI) can be very hard to explain to people and very hard to understand. The thing is, most of the time we look healthy on the outside. But…
Want some more news, events and announcements on SCID? We got 'em! [one_half] [/one_half] [one_half_last] The Expense of Scientific Progress: The Price of Gene Therapy for SCID The…
Remember when PW reported on the Newborn Screening and Gene therapy for the Immune Deficiency SCID? Well guess what our friends at the Immune Deficiency Foundation are doing? The IDF…
April 22nd through April 29th is World PI Week, dedicated to bringing awareness to Primary Immunodeficiencies (PI). If you want to participate, World PI Week has some great information for…
La terapia genética se ha hablado desde hace bastante tiempo, pero las noticias recientes han convertido la esperanza en realidad para los bebés nacidos con adenosina desaminasa (ADA). Los bebés…
Cuando me uní a otros millones de fans obsesionados que veían lo que ha sido la popular episodio "Bubble Boy" en Seinfeld en 1992, no tenía ni idea de que…
It takes an average of seven years for a patient with a rare disease like severe combined immunodeficiency (SCID) to receive a correct diagnosis; and that comes after the patient…
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…
Imagine you're a new parent and your two-month-old starts experiencing some bizarre symptoms. Along with his high fever, his skin turns red and starts peeling at an alarming rate. Multiple infections follow;…
Heather Smith suffered one of the greatest losses known to humanity: the death of her firstborn son, Brandon. He was seemingly healthy until he caught a cold at six months old,…
There are 250+ PI Disorders Out There Primary immunodeficiency disorders were once shrouded in misinformation and a general lack of understanding. Many would argue that this is still true today…
Children’s books have a way of staying with you. My mom used to read to me all the time growing up. Just about every night before bed, she’d grab a…
You may have seen the Jeffery Modell Foundation's name around town, literally, from their educational posters. I was thrilled to come across one in the Chicago O'Hare International Airport. The…
Heather Smith, who is the President and Co-Founder of SCID Angels for Life Foundation, is one tough cookie. Smith has dedicated her life to helping other parents as a result…
Living and Traveling with Primary Immunodeficiency Okay, just because you’re living with Primary Immunodeficiency (PI), doesn’t mean that you’ve got to be a little wall flower or confine yourself to…
Although I’m no “spring chicken,” I still grapple daily with the reality that innocent babies get sick and die, or that they don't die, but they languish and suffer; it’s…
Kudos and congratulations to TV station, KCRA 3 for heading up a special blood drive! They put the spotlight on J.J. and Carson Huish, twin boys who have Severe Combined…
The online Women’s Encyclopedia, had an interesting article about Severe Combined Immunodeficiency (SCID) and I’d like to share some of the highlights: Fast Facts That EVERY Parent Must Know SCID…
Severe combined immunodeficiency (SCID)—one of the many forms of primary immune deficiencies. You may also know it as the "Bubble Boy" disease. Here at Patient Worthy, we've talked a…
Here at Patient Worthy we’ve written before about the heavy toll Severe Combined Immunodeficiency (SCID) can have on families and about the lessons learned from the most well-known SCID case,…
One of the many problems with having a rare disease is that very few people know anything about what you, or your loved one, go through on a day-to-day basis.…
World PI Week is coming up later this month, from April 22-29. So what better way to celebrate than to learn what exactly PI is! Not to be confused with Pi…
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.
