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Future Generations Depend on You

Leave a Legacy for the PI Community: IDF Legacy Society

One of the most powerful ways you can help future generations affected by primary immunodeficiency diseases (PI) is to name IDF in your will. By doing so, you become a lasting part of IDF, the national patient organization dedicated to improving the diagnosis, treatment and quality of life of people with PI.

Fighting for Co-pay Choice Legislation: Iowa Advocacy Day

Ensuring Affordable Access to Care

As a rare disease community, those living with PI may find it difficult to get the lifesaving treatment they need through affordable rates and flat fee only co-pays. IDF works on the issues of co-pay and affordability on both a Federal and State level, but often the State level is where the issue gets met head-on and why IDF leads the charge for our community in states like Iowa.

IDF Walk for PI: Why Do You Walk?

It’s a simple question, yet it’s one that holds so much meaning: Why do you walk for PI? We like to ask the PI community this occasionally to hear from our community and understand what the walks mean to them. The answers are always inspiring and motivating, and help us remember just how important IDF Walk for PI is to those living with PI.

Why do you walk for PI?

Remembering David Vetter’s Gallant Life

The incredible story of David Vetter’s life was recently featured in the BBC’s Witness program, including a touching interview with his mother and IDF Board of Trustees member Carol Ann Demaret. 

In 1971, David, affectionately known as the boy in the bubble, was born with Severe Combined Immune Deficiency (SCID), one of the most severe types of primary immunodeficiency disease (PI).

“David’s gallant life and death took science on a path that has improved the quality of life now for SCID babies and children born with PI,” said Carol Ann.

SCID Newborn Screening in Indiana on the Horizon

UPDATE - SCID in Indiana 2/14/18

HB 1017, which adds which spinal muscular atrophy and severe combined immunodeficiency to the list of disorders in the newborn screening requirements for Indiana, passed the House.  It has now crossed over to the senate and has been referred to the Senate Committee on Health and Provider Services. IDF will be monitoring its progress and advocating in support of its passage to help ensure funding is allocated to implement SCID screening in the coming year.

IDF Volunteers: Mark Your Calendars

Renew Your Volunteer Position before February 9

Looking back on 2017, IDF is thankful for the hard work and dedication from all of our volunteers. You are the heart and soul of many of our programs. From supporting IDF staff at special events, to outreach and raising awareness for primary immunodeficiency diseases (PI), your willingness to devote your time and skills helps our community.

With a growing demand for services and programs from IDF, we are counting on our volunteers to renew for the 2018 year in order to reach those who need us most.

Participate in the IDF Fever Study: Coming Spring 2018

IDF has an exciting research project that developed from discussions in the IDF PI CONNECT Research Forum and IDF Friends. Many individuals with PI report having a lower than normal average body temperature. As a result, when they do have signs of an infection, frequently their temperature does not rise to 100.4°F, the threshold upon which doctors begin to prescribe antibiotics. If this occurs, patients who have infections may not receive critical antibiotics due to missed signs of fever.

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