Our founders, Vicki and Fred Modell, spearheaded efforts to require newborn screening for Severe Combined Immunodeficiency (SCID) in the United States for several years in Washington D.C. In 2018, newborn screening for SCID was finally implemented in all 50 states, Washington D.C., Puerto Rico, and the Navajo Nation. We continue to advocate for SCID screening worldwide because early diagnosis saves lives! See if your country participates in newborn screening for SCID below.
Don’t see your country listed? Send a note to your representatives using our template letter.
World Primary Immunodeficiency Week 2023 was a great success! From all of us at the Jeffrey Modell Foundation, thank you to the expert physicians, patient groups, and other individuals around the world who participated in this year's global movement to raise awareness, create dialogue, and strengthen the bonds of our community. Check back in the coming weeks for the World PI Week 2023 campaign report.
The World PI Week 2022 campaign report is now out! You can read the 2022 WPIW outcomes report here. The outcomes press release is available here.
In 2022, World PI Week focused on the importance of access to healthcare. LIVES CAN BE SAVED. Access to healthcare is a basic human right. People living with PI worldwide depend on it. Each of them is entitled to the correct diagnosis, quality treatment and care.
Find the report here for an overview of the many activities that have been organized worldwide to show support to improve the quality of life of patients.
If you are aware of additional initiatives, please get in touch with us at: firstname.lastname@example.org so these can be captured in the report as well.
Once again, thank you to everyone who joined the Week and contributed to its success!
To view past World PI Week efforts, choose a year below:
It takes 130 plasma donations to treat just ONE patient living with a PI for a year. There is currently an increased need for plasma, and you can be the solution! Plasma can’t be made artificially in a lab—it can only be gathered from healthy donors. Will you sign up to give the gift of life?