Primary Immune Tribune
May 2014
2014 IDF Advocacy Day
Promoting the Patientsí Access to Treatment Act - H.R. 460

IDF hosted its annual Advocacy Day on Capitol Hill Thursday, May 8. More than 40 patients held nearly 100 meetings with their Representatives and Senators. Specific Congressional offices were identified by IDF depending upon their committee memberships. Patients asked their Congressional representatives to sponsor or co-sponsor the Patients’ Access to Treatment Act (PATA, H.R. 460). The day was a productive initiative, resulting in new co-sponsorships and an increased awareness of the challenges faced by the individuals living with primary immunodeficiency diseases (PI).

CLICK HERE to read the full story.



2014 IDF Retreats
Hurry! Space is Limited!

Atlanta, Georgia, June 20-22 (Atlanta is FULL)

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.



2014 IDF Teen Escapes
Register Now!

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
Sheraton Garden Grove Anaheim South
CLICK HERE to register for Garden Grove

Cleveland, OH
August 9–10, 2014
Sheraton Cleveland Airport Hotel
CLICK HERE to register for Cleveland

Early registration is encouraged as limited space is available. CLICK HERE to learn more.



Personal Campaign Pages
New Tool for Online Fundraising

Whether you are running in a marathon, celebrating a birthday, honoring a loved one, or organizing a trivia night, you can create an IDF Personal Campaign Page to create your own fundraising campaign.

CLICK HERE to learn more!



Since You Asked
IDF Question and Answer

Q: My health has been declining and I am having a very hard time working. My doctor suggested that I should file for social security disability benefits. I am feeling overwhelmed about going through this process as I have heard claims are always denied and I will need an attorney. Do you have any suggestions about how to best handle this process?

Q: I have CVID and spend time with my infant granddaughter regularly. She is currently due to have the chickenpox and MMR vaccine. Is it okay for me to be around her when she is receiving live vaccines as part of her well child visits?

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


[FULL STORY]



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Primary Immune Tribune is sponsored by an educational grant from Grifols


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