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

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EU Parliament • JMF’s initiative at the EU Parliament “Call to Action” has generated 121 signatories to-date. • “HOPE” Hospital System is a signatory covering 15,000 leading hospitals throughout Europe. • World Health Organization is in discussion with the JMF for a collaboration going forward. 46
Newborn Screening • Secretary of HHS adds SCID to the Federal Core Panel for Newborn Screening. • JMF has advocated for this program over past 9½ years. This is the first defect to be added to the core panel. • The State of Wisconsin identified and cured the first Newborn screened with SCID. 47
Page 2 and 3: Primary Immunodeficiency Diseases R
Page 4 and 5: Primary Immunodeficiency The Issue:
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 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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