Primary Immune Tribune
June 2015
IDF 2015 National Conference

The IDF 2015 National Conference begins this Thursday, June 25! We have planned a wonderful few days filled with insightful healthcare and life management presentations, engaging educational activities for youth and teens, networking opportunities for all, along with great celebrations and entertainment.

Donít forget to download the official IDF 2015 National Conference App, which includes an updated schedule, maps, link to the THINK ZEBRA! Silent Auction and much more! Visit the App Store or Google Play Store and search for ďIDF 2015 National Conference,Ē or go to http://crowd.cc/2015-idfnc in your mobile browser and click the app download link. Get the app today, and be ready for #IDF2015NC!



Join the Conference Conversation on IDF Friends

Are you not attending the conference? Donít worry! Log into IDF Friends and join the IDF 2015 National Conference Group. Weíll be posting facts from the presentations during the conference. You can also follow what others are posting on social media with the following hashtags:

#IDF2015NC

#thinkzebra

#primaryimmune

Remember you can bid on Silent Auction items without even being at the conference; go to www.biddingforgood.org/idf to register and check out the fantastic items.



IDF Teen Escape Weekends

Join us for this exciting, FREE event exclusively for teens, ages 12-18 diagnosed with PI!

July 25-26, 2015, Linthicum Heights, MD, and August 15-16, 2015, Kansas City, MO

The IDF Teen Escape is a weekend opportunity to acquaint teens diagnosed with a primary immunodeficiency disease with others like themselves. This weekend is filled with fun activities designed to promote friendship, build leadership skills, and develop coping skills. Teens will enjoy an evening outing on Saturday, complete with dinner and recreation.

Medical and life skills experts present valuable information to the teens and encourage them to discuss what it means to live with a primary immunodeficiency disease with other participating teens. Separate sessions for parents are scheduled that offer education and an opportunity to network and share ideas.

You can register for either of Teen Escape at www.primaryimmune.org/events-calendar/.


Contact Your Policymakers through IDF Action Alerts

The IDF Action Alert system is a tool utilized to mobilize our community to take immediate action on legislative issues related to PI at critical times when a patient perspective is needed to remove barriers to care. A strong, united voice can influence public policy issues that impact your health and access to care.

Sign up for IDF Action Alerts, and make reaching out to your public officials easy! We send you a customizable email notice when you are needed to contact policymakers. Just add your name and contact information and hit send. It goes directly to your designated policymaker, and you instantly join the process of democracy and help create change.

Click here to sign up to receive IDF Action Alerts.



Help IDF Walk for PI get 500 participants & 150 teams before the Conference!

You can help us get to 500 participants and 150 teams by June 25, the start of the IDF 2015 National Conference! Currently the IDF Walk for PI has 137 teams and 395 walkers. One lucky Team Captain who registers between today and June 25 will receive an IDF Walk for PI tote bag!

We need you to help us raise $1 million this year to support the vital programs and services IDF provides. In 2015, we will have walks in at least ten locations. If you donít live near one of our sites, you can join the Nationwide Virtual Walk, which allows you to support the walk from wherever you live. Register now to begin to earn prizes, earn membership into the IDF Order of the Zebra, and meet other PI families while having a great time. Go to www.walkforPI.org to register today.

P.S. Team Captains Ė make sure you stop by our walk booth at the National Conference to receive a special gift.



Since You Asked
IDF Question and Answer

Q: I have X-Linked Agammaglobulinemia (XLA) and would like to join a public swim club. Will this put me at a higher risk for bacterial infections?

Q: I have not traveled outside of the United States since I was diagnosed with CVID a couple of years ago, but I am planning a trip abroad. What precautions should I take prior to traveling? Should I get the suggested vaccinations? Will they even help someone with CVID?

Click FULL STORY to see the answer to these questions.


[FULL STORY]



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