Primary Immune Tribune
October 2014
IDF Flu Information for 2014-2015

For the 2014-2015 Flu Season, the Immune Deficiency Foundation (IDF) has published recommendations for patients with primary immunodeficiency diseases (PI) and their families, including prevention, vaccination and creating a family plan.

CLICK HERE to read IDF's 2014-2015 Flu information.

Manage Your Health and Transform Research with IDF ePHR and PI CONNECT

You can now manage and track your health and be a part of research with the new IDF ePHR, the electronic personal health record designed for the PI community. The new IDF ePHR uses an advanced online system that will transform how you manage your health. You can access IDF ePHR from anywhere—your computer, tablet or phone. Manage your health in the palm of your hand!

An added benefit for users of IDF ePHR is the opportunity to be a part of research by consenting into PI CONNECT, the new IDF Patient-Powered Research Network. PI CONNECT connects the de-identified information you enter in your IDF ePHR with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI.

CLICK HERE to watch the IDF ePHR and PI CONNECT info video.


2014 IDF Walk for Primary Immunodeficiency Kicks Off!
New Zebra Mascot Introduced

Our first three walks in Philadelphia, Boston, and Los Angeles have all been great successes.

The Philadelphia walk had a great second year with more than 600 walkers converging on Penn’s Landing on September 28 and raising $60,000! To add to the day’s excitement, the new zebra mascot was introduced.

More than 400 walkers came out to Boston Common on October 5 for our first Boston walk. Thanks to our dedicated teams, over $40,000 was raised!

The second year of our Los Angeles walk had an exciting new location: Griffith Park! On October 19, more than 350 walkers participated in the Los Angeles walk and raised just over $50,000!

To view photos from all three of these events, please CLICK HERE.

Please join us for the next three walks and help us continue the momentum.

Greater Chicago, Cantigny Park (Wheaton): October 26
New York City, Foley Square/Brooklyn Bridge: October 26
Houston, Discovery Green: November 9

Health Insurance and Primary Immunodeficiency Survey
Please Participate!

In a few weeks all patients with PI, and parents of patients, will receive an e-mail invitation from IDF to participate in a survey project that is vital to our community.

The Patient Protection and Affordable Care Act (ACA) was signed into law in March 2010. The goal of the law is to make healthcare more affordable and accessible for millions of Americans who either do not have access to, or cannot afford health insurance.

Recent history suggests that even small changes to how healthcare services are covered, reimbursed or distributed can have profound impacts on patients with PI. Changes to the U.S. healthcare insurance system as a result of the ACA will certainly not be small, and IDF is concerned that some of these changes may create problems for patients with PI. IDF will survey the PI patient population in 2014, and in subsequent years to determine trends in our community.


Time to Re-enroll for Health Insurance
New Health Insurance Video

It’s re-enrollment time for many health insurance plans, including plans offered through the federal health insurance marketplaces. Now is the time to review your current coverage, whether it’s through the marketplaces or through your employer, and make sure it’s the right healthcare plan for you and your family. Watch the new video "Things to Consider When Choosing a Health Plan," for help in making the best possible choice in selecting a private health insurance plan. You can also download the IDF Health Insurance Toolkit, complete with updated information, tips and worksheets.

For plans from federal health insurance marketplaces, starting November 15, you can update your information and compare your current plan with other plans that are available in your area. The open enrollment period runs from November 15 through February 15, but for coverage starting January 1, you must enroll in a health plan by December 15. Visit for more information about the health insurance marketplaces.

Ebola Virus and Plasma Protein Therapies

The recent outbreak of Ebola virus has caused concern for many, including people affected by primary immunodeficiency diseases. To address the many questions and concerns, the Plasma Protein Therapeutics Association (PPTA) has issued a statement about the Ebola virus and Plasma Protein Therapies.

CLICK HERE to read PPTA's statement.

Since You Asked
IDF Question and Answer

Q: I have CVID and am preparing to get a flu shot. This year I was told there are three types of flu shots: regular, quad, and high potency. Which one would be best for me?

Q: Are there any specific recommendations being made for CVID patients in school with current EV68 outbreak?

Click FULL STORY to see the answer to these questions.


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Primary Immune Tribune is sponsored by an educational grant from Grifols

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