Primary Immune Tribune
February 2017
Register Now for the IDF 2017 National Conference
Anaheim, CA | June 15-17, 2017

Join us for the IDF 2017 National Conference in Anaheim, CA June 15-17, 2017! The Immune Deficiency Foundation (IDF) brings together the community every other year for a three-day conference, the world's largest gathering of people living with primary immunodeficiency diseases (PI).

And now more than ever, the impact of the IDF community is critical. Let's come together at our 9th National Conference to examine how far we've come as a rare disease community and how much more we can accomplish in the future!

From physicians to nurses to specialized life management experts, individuals and families are presented with an unsurpassed opportunity to network with those on the cutting edge of research and treatment. Much like conferences in the past, we will have something for everyone. Whether you have previously attended or this is your first conference, there will be plenty of sessions for you to enjoy!

IDF 2017 National Conference

Anaheim, CA | June 15-17, 2017

Anaheim Marriott

Scholarships & Registration

Limited scholarships are available. Scholarship application deadline is Monday, March 27, 2017Click here for more scholarship information.

Online registration is available at www.idfnationalconference.org/register. Early registration rates are available until Monday, May 1, 2017. Click here to register.

Click FULL STORY for more conference details.


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IDF 2017 National Conference Room Scholarships
Looking for a Unique Way to Help Others with PI?

The IDF National Conference is the largest gathering of individuals and families with PI in the world, and we are always looking for ways to ensure that all members of the community have an equal opportunity to attend the conference. That’s where you can come in!

Last year IDF provided about 125 “room scholarships” to pay for the rooms of those who hoped to come but who could not afford to do so. Scholarships are traditionally awarded to first-time attendees because the opportunity to learn from medical experts and interact with others in the community can be lifechanging. The cost of three nights in the conference hotel, approximately $700, is often too high for many individuals and families who are already struggling with medical bills and other financial hardships—and these are the ones who often benefit from the experience the most.

If you are interested in providing a room scholarship to help a person or family living with PI, go to: www.primaryimmune.org/give. Alternatively, you can mail in a check made out to “Immune Deficiency Foundation” with “National Conference Scholarship” in the memo line. Remember, your gift to IDF is tax deductible.

Your generosity will support the opportunity of a lifetime for someone or some family living with PI. Thank you for your consideration!



IDF Efforts to Promote SCID Newborn Screening in Arizona

IDF has made great strides toward implementing newborn screening for Severe Combined Immune Deficiency (SCID) in Arizona. The combined efforts of IDF, the SCID, Angels for Life Foundation and dedicated volunteers have proved to be so successful that we anticipate legislation will be enacted and Governor Doug Ducey’s budget will be approved to enable SCID screening to be implemented in Arizona by the end of the legislative session in April.  

The work completed in Arizona is a highlight of IDF’s public policy advocacy efforts over the past several months.

Click here to read the entire story on the IDF SCID Newborn Screening blog. 

Pictured: Rachael Pirie, mother of a child with SCID, meets Arizona Governor Doug Ducey, February 8, 2017, to advocate for SCID Newborn Screening in the state. 



Participate in IDF Fever Study

IDF has an exciting research project that developed from discussions in the IDF PI CONNECT Research Forum and IDF Friends. Many individuals with PI report having a lower than normal average body temperature. As a result, when they do have signs of an infection, frequently their temperature does not rise to 100.4°F, the threshold upon which doctors begin to prescribe antibiotics. If this occurs, patients who have infections may not receive critical antibiotics due to missed signs of fever.

These conversations about fever in PI even made their way into the PI CONNECT Live! session held at the IDF 2015 National Conference. Here, the idea for a patient-based study on fever in PI was born.

Currently, no known literature exists on average body temperature in persons with PI. In order to address this gap in the literature, IDF would like to conduct a study to determine if people with PI have lower than average body temperature. This study will be 100% independently funded by IDF through funds raised through IDF Walk for Primary Immunodeficiency.

We are on our way to making this study a reality, but we need your participation! In the next month or so, please be on the lookout for an e-mail invitation from us to take a brief, online screening survey.

Click FULL STORY for complete details.


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IDF Volunteer Update
Welcome to the Team & Renew Reminder, March 1

We’re excited to welcome the following awesome volunteers, who created a new profile in the IDF Volunteer Connection Center. We can’t wait to get you started with your selected volunteer roles!

January 2017: Debbie A., Kimberly B., Julia B., Jane C., Erin D., Brandon D., Jessica F., Danielle F., Nichole G., Jessica J., Melvin L., Angela M., Ian R., Holly R. and Marc S.

Are you interested in joining the IDF Volunteer Network?  Find a volunteer role that matches your interests by visiting the IDF Volunteer Connection Center today: www.primaryimmune.org/volunteer

Mark Your Calendars
If you are a returning IDF volunteer, please remember to renew your status. The deadline to renew active volunteer status is tomorrow, Wednesday, March 1.  

Volunteer Renewal Checklist

Need help using the IDF Volunteer Connection Center? Contact the Volunteer Development Manager with your questions: volunteer@primaryimmune.org.



IDF Teen Escapes 2017
Dallas, TX & West Harrison, New York

Take part in IDF Teen Escapes 2017! These weekend getaways exclusively for teens, ages 12-18, who have been diagnosed with primary immunodeficiency diseases (PI), help 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 focused on their own issues and concerns.

IDF Teen Escapes 2017

Dallas, TX: July 15-16
Sheraton Dallas Hotel by the Galleria

West Harrison, New York: July 29-30
Renaissance Westchester Hotel

IDF Teen Escape provides a program in which teen patients and their families can relax, learn, have fun, and connect in a setting away from the familiarity of day-to-day medical concerns.

The weekend offers:

  • Fun activities to build leadership skills and develop coping abilities
  • Presentations from medical and life skills experts
  • Dave & Buster’s for dinner and games
  • Separate sessions just for parents

Join us this summer for IDF Teen Escape!

Click here to register for Dallas, TX: July 15-16.

Click here to register for West Harrison, New York: July 29-30.

To learn more about IDF Teen Escape, go to: www.primaryimmune.org/idf-teen-escape

IDF Teen Escapes are supported by charitable donations from CSL Behring, Shire, AmerisourceBergen Corporation and Horizon Pharma.



Since You Asked
Question & Answer

Question: I have IgA deficiency. Can I be an organ donor?

Question: My son has been recently diagnosed with Specific Antibody Deficiency. How cautious and “germ conscious” do I have to be? Should I limit time in public areas? What about going to school and playing sports?

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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