The IDF’s 2015 National Conference is quickly approaching!
For 3 days, Louisiana will welcome the IDF and all of its constituents and supporters. From Thursday, June 25th- Saturday 27th, the IDF Conference will host all members of the primary immunodeficiency diseases (PI), community to learn about the 250 rare, chronic PI disorders, connect with each other and share the newest information out there.
This year’s conference is extra exciting for 2 reasons!
1. The official name of the IDF Zebra will be announced!
Throughout the month of May, the IDF has been accepting name submissions to name the celebrity IDF Zebra. The Zebra was born in 2009 through IDF’s “Think Zebra” Campaign and has since become a celebrity within the community helping especially children explain their disease to others.
Click here to learn why the PI community identifies with the zebra.
Stay tuned and check back with us for the IDF zebra’s name and Instagram account! We at Patient Worthy will certainly “friend” the zebra!
2. The IDF is asking for our help! Get the message out! #testforSCID
Louisiana is not 1 of the 31 states that routinely screens newborns for Severe Combined Immune Deficiency (SCID)- aka the bubble boy disease. The reason being “lack of funding” as reported by SCID.net. This newborn screening program has proven to save lives; enabling babies a chance to live normal, healthy lives and actually reduces overall healthcare costs for patients! SCID is a nearly curable disease if detected early enough, so why wouldn’t LA screen newborns for it?
Yep, that’s right! The IDF and it’s supporters are calling out Louisiana Governor Bobby Jindal and other state officials and are rallying on Thursday at the conference to urge them to do the right thing and screen Louisiana babies for SCID!
Think all babies deserve a fighting chance? We Do! Participate here! Click here to Send a Message!