IDF Action Alert - IVIG Demonstratrion Project Bill Introduced
Contact Your Representative Today!
 Congresswoman Doris Matsui (D-CA) has introduced HR 5597, the Medicare IVIG Patient Access Demonstration Project with 6 bi-partisan co-sponsors: Representatives Kevin Brady (R-TX), Bobby Rush (D-IL), Jim Gerlach (R-PA), Chris Van Hollen (D-MD), Lee Terry (R-NE), Bruce Braley (D-IA), and Joseph Pitts (R-PA).
We need your help today! Please complete the action alert to ask your representative to be a co-sponsor of hr 5597!
CLICK HERE TO TAKE ACTION!
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Teen Escape with IDF!
Free Event for Teens Ages 13-18
 Register online now for the IDF Teen Escape in Minnesota, July 17 & 18!
Deadline for registration is Friday, July 9, 2010!
The IDF Teen Escape weekend is an opportunity to acquaint teens diagnosed with primary immunodeficiency diseases (PIDD) with others like themselves. This weekend is filled with fun activities designed to promote friendship, build leadership skills and develop coping skills.
Medical and life skills experts will present valuable information to the teens as well as encourage them to discuss what it means to live with a PIDD with other participating teens. Sessions for teens are scheduled that focus on transition and advocacy issues. Saturday morning even offers information for parents and guardians!
CLICK HERE for more info, and online registration
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SCID Included in Newborn Screening Standards
Secretary of HHS Announces Addition of SCID
Kathleen Sebelius, Secretary of Health and Human Services (HHS), recently announced the addition of Severe Combined Immunodeficiency (SCID)—commonly known as bubble boy disease—to the core panel of 29 genetic disorders - as part of her recommendation to adopt the national Recommended Uniform Screening Panel. The Secretary made her announcement in a letter to Dr. Rodney Howell, Chair of the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). SCID is the first nominated condition to be added to the core panel of disorders.
[FULL STORY]
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NORD Adds a PIDD Co-Payment Fund
NORD's Patient Assistance Program
The National Organization for Rare Diseases (NORD) is pleased to announce the addition of a Primary Immune Deficiency Co-Payment Fund to their Patient Assistance Program.
The program is available to both commercially and Medicare insured individuals with a diagnosis of Primary Immune Deficiency and who have been prescribed an FDA approved medication for treatment of PID.
Applications for assistance will be sent to individuals upon request. Applicants to the program will need to meet objective eligibility criteria determined by NORD.
To contact the NORD/PID program, call 877-241-7220, or email pid.assistance@rarediseases.org.
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Since You Asked
IDF Question and Answer
Q: Can you please tell me the difference between being immune deficient and being immune suppressed. Or if I have CVID, am I considered to have both?
Q: I am 52 years old and was just diagnosed with CVID. My immunologist told me this is a genetic condition. How can I be an adult and get diagnosed with a genetic disease? This is very confusing and difficult to explain to my family and friends.
Click on "Full Story" below to learn the answers to these questions.
[FULL STORY]
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IDF Calendar of Events
Click Here to View IDF's Calendar of Events
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Primary Immune Tribune
