IDF Patient & Family Handbook for Primary Immunodeficiency ... - IDFA

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140 Reference Reference U.S. Department of Justice Civil Rights Division: Americans with Disabilities Act (ADA) www.usdoj.gov/crt/ada/adahom1.htm (800) 514-0301 This division of the government provides information to assist persons with disabilities and to help communities better serve these individuals. U.S. Department of Labor: Continuation of Health Coverage (COBRA) www.dol.gov/dol/topic/health-plans/cobra.htm COBRA gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and other life events. U.S. Health Care Financing Administration (HCFA) www.hcfa.gov HCFA is the federal agency that administers Medicare, Medicaid and the State Children’s Health Insurance Program (SCHIP). The Web site provides information on these programs and initiatives put out by the Department of Health and Human Services, such as the “Health Insurance Portability and Accountability Act.” It also lists the state health insurance commissioners. U.S. Social Security Administration www.ssa.gov This Web site contains complete information about Social Security. National Organizations American Academy of Allergy, Asthma, and Immunology (AAAAI) www.aaaai.org (313) 371-8600 Physician Referral Service: (800) 822-2762 AAAAI is a professional organization for physicians who treat patients with allergies, asthma and immunologic disorders. The organization provides a worldwide referral system for physicians in various geographical regions. American Academy of Pediatrics (AAP) www.aap.org (847) 434-4000 AAP is a professional organization for pediatricians. It is committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. Clinical Immunology Society www.clinimmsoc.org (414) 224-8095 The mission of the Clinical Immunology Society is to facilitate education, translational research and novel approaches to therapy in clinical immunology to promote excellence in the care of patients with immunologic/ inflammatory disorders. Federation of Clinical Immunology Societies (FOCIS) www.focisnet.org FOCIS exists to improve human health through immunology by fostering interdisciplinary approaches to both understand and treat immune-based diseases. Infusion Nurses Society (INS) www.ins1.org INS is dedicated to exceeding the public’s expectations of excellence by setting the standard for infusion care. National Marrow Donor Program (NMDP) www.marrow.org (800) 627-7692 NMDP is a non-profit organization that facilitates unrelated marrow and blood stem cell transplants for patients with life-threatening diseases who do not have matching donors in their families. International Organizations European Society for Immunodeficiencies (ESID) www.esid.org ESID is a non-profit medical organization. The purpose of ESID is to foster excellence in research and medical practice and to promote interaction with nurses and patient associations, so as to increase exchange of information among patients, parents of patients, nurses, doctors and researchers. International Nursing Group for Immunodeficiencies (INGID) www.ingid.org The purpose of INGID is to improve and extend the quality of nursing care of patients with primary immunodeficiencies, and to increase the awareness and understanding of primary immunodeficiencies amongst nurses.
Reference 141 International Patient Organization for Primary Immunodeficiencies (IPOPI) www.ipopi.org IPOPI is an international organization whose members are national patient organizations for the primary immunodeficiencies. The Web site provides general information on PIDD and resource contacts for patients and professionals worldwide. The following countries have a patient support organization: Argentina www.aapidp.com.ar Australia www.idfaustralia.org Canada www.cipo.net Denmark www.idf.dk Estonia janne.rimmel@mail.ee Finland anna-riitta.satama@luukku.com France www.associationiris.org Germany www.dsai.de www.immundefekte.de Hungary meerdos@yahoo.com Iceland onaemisgalli@onaemisgallar.is India rubbyipspi@rediffmail.com Iran www.iranianpia.org Ireland crone@eircom.net Italy www.aip-it.org Morocco www.associationhajar.org New Zealand www.idfnz.org.nz Norway evabrox@online.no Poland immuno@czd.vaw.pl South Africa www.pinsa.org.za Spain www.aedip.com Sweden www.pio.nu Switzerland s.vassalli@bluewin.ch The Netherlands www.stichtingvoorstoornissen.nl United Kingdom www.pia.org.uk United States www.primaryimmune.org www.info4pi.org Yugoslavia koruga@sezampro.yu Education Issues HEATH Resource Center http://www.heath.gwu.edu (800) 544-3284 The HEATH Resource Center is the national clearinghouse on postsecondary education for individuals with disabilities. It provides information about educational support services, policies, procedures, adaptations and opportunities at American campuses, vocational-technical schools and other postsecondary training sites. National Information Center for Handicapped Children and Youth (NICHY) www.nichcy.org (800) 695-0285 NICHY is a national information and referral center that provides information on disabilities and disability-related issues for families, educators and other professionals. Specific information on early intervention programs, special education, individualized education programs, education rights and transition to adult life can be found through this organization. Wrightslaw www.wrightslaw.com This Web site is dedicated to helping individuals advocate for children with disabilities with regard to the education system and legal issues. Latin American Group for Primary Immunodeficiencies (LAGID) www.lagid.lsuhsc.edu LAGID is a professional organization comprised of physicians from various Latino countries who are dedicated to promoting the awareness, diagnosis and treatment of primary immunodeficiency diseases in these countries.
Page 1 and 2:
Patient & Family Handbook For Prima
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Patient & Family Handbook For Prima
Page 5 and 6:
Patient and Family Handbook i Prefa
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Patient and Family Handbook iii Abo
Page 9 and 10:
The Immune System and Primary Immun
Page 11 and 12:
The Immune System And Primary Immun
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Common Variable Immune Deficiency c
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Common Variable Immune Deficiency 1
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X-Linked Agammaglobulinemia chapter
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X-Linked Agammaglobulinemia 17 Clin
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Selective IgA Deficiency chapter 4
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Selective IgA Deficiency 21 Clinica
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Severe Combined Immunodeficiency ch
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Severe Combined Immunodeficiency 25
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Chronic Granulomatous Disease 31 De
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Chronic Granulomatous Disease 33 Di
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Chronic Granulomatous Disease 35 Tr
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Wiskott-Aldrich Syndrome 37 Definit
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Wiskott-Aldrich Syndrome 39 Maligna
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Wiskott-Aldrich Syndrome 41 Treatme
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Hyper IgM Syndrome 43 Definition of
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Hyper IgM Syndrome 45 Treatment of
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DiGeorge Syndrome 47 Definition of
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DiGeorge Syndrome 49 Therapy for Di
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IgG Subclass Deficiency and Specifi
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IgG Subclass Deficiency and Specifi
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Ataxia Telangiectasia 55 Definition
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Ataxia Telangiectasia 57 General Tr
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Hyper IgE Syndrome 59 Definition of
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Hyper IgE Syndrome 61 Inheritance o
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Complement Deficiencies 63 Definiti
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Complement Deficiencies 65 Treatmen
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Other Important Primary Immunodefic
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Other Important Primary Immunodefic
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Inheritance chapter 15 Many disease
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Inheritance 73 Types of Inheritance
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Inheritance 75 Types of Inheritance
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Inheritance 77 Reproductive Options
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Laboratory Tests chapter 16 Laborat
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Laboratory Tests 81 Major Categorie
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Laboratory Tests 83 Summary Laborat
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General Care 85 General Health Meas
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General Care 87 Exercise Participat
Page 97 and 98: General Care 89 General Care During
Page 99 and 100: General Care 91 General Care During
Page 101 and 102: Specific Medical Therapy 93 Introdu
Page 103 and 104: Specific Medical Therapy 95 General
Page 105 and 106: Specific Medical Therapy 97 Hematop
Page 107 and 108: Specific Medical Therapy 99 Granulo
Page 109 and 110: Specific Medical Therapy 101 PEG-AD
Page 111 and 112: Specific Medical Therapy 103 Gene T
Page 113 and 114: Infants and Children with Primary I
Page 119 and 120: Adolescents with Primary Immunodefi
Page 127 and 128: Adults with Primary Immunodeficienc
Page 133 and 134: Health Insurance chapter 22 Having
Page 135 and 136: Health Insurance 127 Who Are the
Page 141 and 142: Health Insurance 133 LIFETIME MAXIM
Page 143 and 144: Glossary 135 Gamma globulins: The p
Page 145 and 146: Glossary 137 Sepsis: An infection o
Page 147: Reference 139 NIH Clinical Trials w
Page 151 and 152: Reference 143 Manufacturing Compani
Page 153 and 154: Reference 145 Books For Youth Balkw
Page 156: This publication has been made poss
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