Jeffrey Modell Foundation Overview (PDF, 6.4MB) - California ...

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Primary Immunodeficiency The Issue: Under-Diagnosis “70% to 90% of all PI patients in the United States and other regions of the world are undiagnosed.” ¹ ¹ Luigi Notarangelo, MD. Past President of the European Society for Immunodeficiencies (ESID) and Director of the Expert Committee on PI for the World Health Organization/IUIS Expert Committee, in a report to the EU Parliament. 4
How Do We Address The Issue? Physician Education and Public Awareness • Identify suspected and “at risk” patients. • Refer to JMF Referral Centers Network. • Provide early and appropriate diagnosis. • Generate effective intervention and treatment for lifetime management. 5
Page 2 and 3: Primary Immunodeficiency Diseases R
Page 6 and 7: Who Do We Reach and How Do We Reach
Page 8 and 9: Educational Posters to Physicians 8
Page 10 and 11: 10 Warning Signs Posters Around the
Page 12 and 13: Brochures for Patients AND 12
Page 14 and 15: As Seen In… 14
Page 16 and 17: Airports, Shopping Malls, and High
Page 18 and 19: The Jeffrey Modell Centers Network
Page 20 and 21: Where are the JMF Centers in the U.
Page 22 and 23: AFRICA CANADA EUROPE Kuwait Algeria
Page 24 and 25: 2010 Jeffrey Modell Centers Survey
Page 26 and 27: Survey of Jeffrey Modell Centers Gl
Page 28 and 29: Survey of Jeffrey Modell Centers In
Page 30 and 31: 2010 - 8 Major Immunodeficiency Gro
Page 32 and 33: JMCN Comparison with ESID 32 32
Page 34 and 35: What about the Quality of Life for
Page 36 and 37: 44.7 12.6 Undiagnosed Patients Diag
Page 38 and 39: Sources for Economic Study • Hosp
Page 40 and 41: Physicians’ Conclusion on Quality
Page 42 and 43: JMF Program Accomplishments in the
Page 44 and 45: JMF Program Accomplishments in the
Page 46 and 47: EU Parliament • JMF’s initiativ
Page 48: Newborn Screening • Late diagnosi
Page 51 and 52: TRACE Program Studies I. The TRACE
Page 53 and 54: NEW! NEW! TRACE Program Studies Con
Page 55 and 56:
Genome-wide Sequencing in the Newbo
Page 57 and 58:
What is Software for Primary I mmun
Page 59 and 60:
What Data Will Generate? HIPAA-comp
Page 61 and 62:
Analyzer Data Summary From Beta Ben
Page 63 and 64:
Analyzer Data Summary From Beta Ben
Page 65 and 66:
Anticipated Outcomes for “High Ri
Page 67 and 68:
Analyzer When Surveyed, participant
Page 69 and 70:
Why is Right for you? • Technical
Page 71 and 72:
How to Begin ? There are two ways t
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Jeffrey Modell Foundation Overview (PDF, 6.4MB) - California ...

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