Primary Immune Tribune
November 2014
Support the Immune Deficiency Foundation
Help Transform Lives!

You can transform lives, right now, with your gift to the Immune Deficiency Foundation (IDF). As the nation’s trusted resource for individuals living with primary immunodeficiency diseases (PI), IDF is here for all who need information, support, a sense of community, and hope. Patients and families continue to rely on IDF for information that is as accurate as it is accessible. They can trust our networks and programs to support them when they need it.


[FULL STORY]


Accepting Requests
IDF & USIDNET LeBien Visiting Professor Program

To help improve the diagnosis and treatment of primary immunodeficiency diseases, IDF invites teaching hospitals to benefit from its free educational program for teaching hospitals throughout the U.S.—The IDF & USIDNET LeBien Visiting Professor Program. This popular program provides a leading clinical immunologist to conduct Grand Rounds and present at educational activities, such as bedside rounds, house staff presentations and medical resident conferences.

Requests for the IDF & USIDNET LeBien Visiting Professor Program for 2015 are now being accepted. Simply write a brief (one page) Letter of Request stating your reason to participate in the program and how your students would benefit. Please include a tentative list of teaching and clinical activities. Submit this information to idfvisitingprofessor@primaryimmune.org by January 16, 2015. Contact IDF should you have any questions: 800-296-4433.



Set Reminders in the IDF ePHR
Another Great Way to Help Manage Your Health!

Now you can use the IDF ePHR to set reminders to more easily manage your health. Set reminders for frequent medications, infusions, healthcare appointments, and more. Reminders are sent directly to your email and also to any family members or healthcare providers you choose.

The Reminders tool is just one of the ways the IDF ePHR is helping you to take control of your health. Sign up today to see more! www.idfePHR.org

When you create an IDF ePHR account, you may join PI CONNECT, the IDF Patient-Powered Research Network. PI CONNECT joins the information you enter in your IDF ePHR with the United States Immunodeficiency Network (USIDNET) patient-consented registry, containing clinical data on several thousand patients with PI. Your information is safe, secure and de-identified. Through PI CONNECT you can help guide research, and the information you share provides real-time information, giving researchers a better idea of the true patient experience.

Get started now at www.idfephr.org!



Help IDF While you Shop at Amazon.com
You shop. Amazon gives.

Do you plan to do any holiday shopping through Amazon.com? If so, then please sign up for Amazon Smile!

If you login to Amazon via https://smile.amazon.com/ch/52-1214782, you’ll be able to select IDF as the charity you’d like to support. From that point on, whenever you shop while on the Smile site, Amazon will donate 0.5% of what you paid to IDF! For more information please visit: https://smile.amazon.com/about



2014 IDF Walk for PI
Bringing Community Together and Raising $700K for IDF

IDF continued its second year of success with the 2014 IDF Walk for Primary Immunodeficiency as over 2,800 people participated and raised more than $375,000. Our sponsor commitments brought the overall funds raised to over $700,000 in support of vital IDF programs and services. Boston, Houston and New York joined our existing sites in Chicago, Los Angeles, and Philadelphia for a total of six events, all of which had beautiful weather this year. In addition to the six primary events, people from across the country have raised awareness and thousands of dollars through the Nationwide Virtual Walk, which runs until December 31, 2014.

IDF is incredibly grateful for the funds that were raised, the awareness of PI that was generated, and the enthusiasm for this increasingly successful initiative. We hope that you will follow the Walk For PI on Facebook to stay up to date in 2015 and contact walk@primaryimmune.org with any questions.


[FULL STORY]


Since You Asked
IDF Question and Answer

Q: I have a plan that I purchased through the marketplace last year. I just received a letter that this plan will no longer be available. What should I do?

Q: How cautious and “germ conscious” do I have to be with my child with primary immunodeficiency? Can we go shopping, to the movies? Should my child go 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