Primary Immune Tribune
July 2014
IDF Retreat in Portland, Oregon!
Join Us 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 to learn more, or to register today.

Join the Order of the Zebra!

The Order is the elite group of fundraisers whose efforts make an extraordinary impact on the success of IDF Walk for Primary Immunodeficiency.  If you set a fundraising goal of $1,000 or more on your personal fundraising page, and then reach that goal, you will be inducted into the IDF Order of the Zebra!

We are very excited to announce that we have our first members of the Order of the Zebra, Faith Hahesy, Greater Chicago, Haley Malloy, Boston and Maureen Polacci, Los Angeles. Way to go Faith, Haley and Maureen!

To join the order all you need to do is register for a walk near you, select a goal of $1,000 or more, and use IDF’s online resources to help you reach that goal!

Members of the Order receive benefits including: a special item signifying your Order membership that can be worn at the walk, announcement of your name during the opening remarks at the walk, listing of your name as an Order member on the walk website and more. For a complete list of items and to register for a walk today, please visit:

IDF Teen Escapes

IDF Teen Escape is a weekend getaway exclusively for teens, ages 12-18, who have been diagnosed with a primary immunodeficiency disease (PI). During the weekend, IDF helps teens develop coping skills, promote and nurture friendships and provide educational guidance. While the teens are taking advantage of entertaining and educational activities, parents participate in sessions geared toward their own issues and concerns.

Garden Grove, CA, July 26-27, 2014
Click here to register for Garden Grove

Cleveland, OH, August 9–10, 2014
Click here to register for Cleveland

Early registration is encouraged as limited space is available.

IDF Young Adult Weekends

Garden Grove, CA, July 26–27, 2014

Cleveland, OH, August 9–10, 2014

Are you a young adult living with primary immunodeficiency (PI)? Join us at one of our IDF Young Adult Weekends!

These weekends are a chance for you to talk with experts about PI and meet other young adults who understand what it’s like to live with PI. You’ll get valuable information on a wide variety of topics including: Tips to Manage Your Health, Your Education and Career, Navigating Health Insurance, and more!

Registration for the weekend is FREE and is all-inclusive and covers your hotel room for Saturday night, meals (Saturday lunch and dinner, Sunday breakfast and lunch) and all programs.

If you have a PI, you’re not in high school anymore and you’re still figuring things out, you can attend the IDF Young Adult Weekend! We recommend this weekend for ages 19-30. The weekend starts at 10:00 a.m. on Saturday and ends at noon on Sunday.

Click here to register for Garden Grove.

Click here to register for Cleveland.

IDF Seeking Questions and Concerns for Insurance Video

It’s that time of year, for many people health plan open enrollment is right around the corner. Purchasing a health plan is a big decision, and IDF wants to ensure you have the knowledge and resources you need when it comes to choosing a plan for you and your family. We are currently developing a video project to help address some of the most common insurance questions from the PI community. What are your questions or concerns for open enrollment and choosing a health plan that you would like to see covered in a video? Send your suggestions to

Polio Declared Public Health Emergency by WHO and CDC
CDC Recommends Polio Vaccination for International Travelers

Largely as a result of the political turmoil and armed conflicts in several middle-eastern and African countries, the CDC has updated its recommendations on polio vaccination for travelers in light of the World Health Organization's recent declaration of polio as a public health emergency of international concern.


New Advocacy Channel Video
Covers the Issue of Specialty Tier Coinsurance and the Patientsí Access to Treatments Act

In the newest IDF Advocacy Channel video, Carolyn advocates for the Patients’ Access to Treatments Act, HR 460, to address the issue of unaffordable out-of-pocket expenses for immunoglobulin therapy.

CLICK HERE to watch the new video.

Additionally, you can watch all of the IDF Advocacy Channel videos at

To contact Members of Congress and ask for their support of HR 460, send an email through IDF Action Alert

Since You Asked
IDF Question and Answer

Q: I am a patient with CVID and osteoporosis. It has been suggested that I use Prolia to treat my osteoporosis. Prolia is used to treat bone loss in women who are at high risk for bone fracture after menopause. It belongs to a class of drugs called monoclonal antibodies and is administered as a single subcutaneous injection once every 6 months. Unfortunately, one of the side effects is higher risk of infections. Is this safe for a patient with CVID?

Q: My child was recently diagnosed with X-linked agammaglobulinemia and needs to have immunoglobulin replacement therapy. The specialist wants to start IVIG treatments as soon as possible.

I have an insurance plan, which is a self-funded plan through my employer. It specifically states that IVIG is an excluded benefit for those newly diagnosed and for those whose treatment began on or after January 15, 2010.

What can I do?


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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