Primary Immune Tribune
April 2014
IDF Medical Advisory Committee Publishes Vaccination Recommendations
Recommendations for live viral and bacterial vaccines for patients with PI and their close contacts

The Immune Deficiency Foundation (IDF) addresses the debate over vaccinations, stressing the importance of educating the public about primary immunodeficiency diseases during National Primary Immunodeficiency Awareness Month. In “Recommendations for live viral and bacterial vaccines in immunodeficient patients and their close contacts” appearing in the April edition of The Journal of Allergy and Clinical Immunology, the IDF Medical Advisory Committee responds to the uncertainty regarding which live viral or bacterial vaccines can be given to patients with primary immunodeficiency diseases as well as the growing neglect of societal adherence to routine immunizations.

[FULL STORY]


Victory for the PI Community!
HCSC Adopts New Ig Policy

IDF is pleased to announce to the PI community that after numerous discussions between IDF and the Health Care Services Corporation (HCSC), owner of the Blue Cross Blue Shield companies in Illinois, Texas, Oklahoma, New Mexico and Montana, HCSC has adopted a new immunoglobulin (Ig) medical policy. The recent collaboration between HCSC, IDF and leading immunologists resulted in a model policy for Ig Replacement. The new medical policy is effective April 15, 2014.

CLICK HERE to read the full story.


New App for Whack-A-Germ, IDF Arcade Game
Download Today!

One of the most popular games from the IDF Arcade, Whack-A-Germ, now has an app! The IDF Arcade combines education and entertainment to teach children about primary immunodeficiency diseases, inspired by the characters from Our Immune System, IDF’s children’s book.

In the Whack-A-Germ app, players get the satisfaction of whacking the germ while watching out for the friendly T-cells and phagocytes. With colorful graphics and fun music, this app is great for little zebras!

 

CLICK HERE to download the Whack-A-Germ app from the Google Play Store

CLICK HERE to download the Whack-A-Germ app from the iTunes Store

The IDF Arcade and games are sponsored by IgG America/ASD Healthcare/US Bioservices.



New Advocacy Channel Video
Shopping in the Health Insurance Marketplaces

Marian gives her experience and tips for purchasing a health plan through the health insurance marketplace in the latest IDF Advocacy Channel video. You can watch her tell her story at https://www.youtube.com/watch?v=B6_-93j_f4o&feature=youtu.be.

To see all of the IDF Advocacy Channel videos, please visit http://primaryimmune.org/idf-advocacy-center/idf-advocacy-channel/


2014 IDF Retreats
Space is Limited, Sign Up Today!

Atlanta, Georgia, June 20-22
(Separate programming for CGD in Atlanta)

Portland, Oregon, September 5-7

IDF Retreats are weekend gatherings designed with everyone in the primary immunodeficiency community in mind—including you! Patients, parents, siblings, children and partners are encouraged to attend and learn how to develop better approaches to living with primary immunodeficiency. Plus, you can connect with others going through similar experiences and have some fun!

Learn from Experts
You will learn the latest information about the treatment and management of primary immunodeficiency diseases from leading physicians and healthcare professionals. You can get your questions answered about everyday concerns during panel discussions with experts in their fields. For the younger members of the community, the youth and teen programs offer both education and fun.

Connect with Others
Whether you are newly diagnosed or have been living with a primary immunodeficiency disease for years, IDF Retreats offers you an opportunity to connect with others. Enjoy an atmosphere where you can build relationships with others who share common experiences, therapies and feelings.

Visit http://primaryimmune.org/programs/idf-retreats to learn more, or to register today.



New WalkforPI Fundraising Incentive Prizes
Register Today!

Need more walk inspiration? Now there are six more reasons to get moving for the IDF Walk for Primary Immunodeficiency!

Raise $100 = Receive a Walk for PI t-shirt
Raise $250 = Receive a Walk Rope Tote
Raise $500 = Receive a Walk Sweatshirt
Raise $1,000 = Receive a Walk Bluetooth Speaker
Raise $2,500 = Receive a Walk Daypack
Raise $5,000 = Receive a Walk Teton 3-in-1 Coat

For more information, please visit www.walkforPI.org. Don’t forget to register today so you can be eligible for one of these fantastic prizes!


Since You Asked
IDF Question and Answer

Q:  We have a family history of CVID. My niece is pregnant, and I would like to know if there is a special test that can be given to her newborn to see if he/she will be susceptible to CVID.

Q:  My 6-year-old daughter was recently diagnosed with primary immunodeficiency. How cautious and “germ conscious” do I have to be with her? Can we go shopping, to the movies? What about going to school?

Click “FULL STORY” to see the answer to these questions.


[FULL STORY]



Click here to subscribe to the IDF eNewsletter


Primary Immune Tribune is sponsored by an educational grant from Grifols


Powered by IMN