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

More documents

Recommendations

Info

142 Reference Reference Patient Advocacy and Support Organizations Advocating for Chronic Conditions, Entitlements and Social Services (ACCESS) (888) 700-7010 ACCESS helps families navigate the often complex maze of state and federal entitlement programs, as well as eligibility for health insurance through state high-risk pools and other alternatives and through group health insurance continuation under federal law (COBRA and HIPAA). Children’s Defense Fund www.childrensdefense.org (800) 233-1200 The Children’s Defense Fund is a non-profit organization devoted to children’s issues, including the Children’s Health Insurance Program. The Web site provides information on these topics. Families USA www.familiesusa.org (202) 628-3030 Families USA is a non-profit organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans. The Web site contains state and national resources. Family Voices www.familyvoices.org (888) 835-5669 Family Voices is a national organization that provides information and education concerning the health care of children with special health needs. ImmunoDeficiency Resource (IDR) http://bioinf.uta.fi/idr/index.shtml IDR is a Web accessible compendium of information on the immunodeficiencies. This resource includes tools for clinical, biochemical, genetic, structural and computational analyses as well as links to related information maintained by others. National Committee for Quality Assurance (NCQA) www.ncqa.org NCQA is a private, not-for-profit organization dedicated to assessing and reporting on the quality of managed care plans. National Disabilities Rights Network (NDRN) www.ndrn.org NDRN is a non-profit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities. National Organization for Rare Disorders (NORD) www.rarediseases.org (800) 999-NORD NORD is a non-profit organization which provides information, programs and services for thousands of rare medical conditions, including primary immune deficiencies. National Patient Travel Center www.patienttravel.org (800) 296-3797 This non-profit organization provides a variety of services to individuals and families seeking ways to travel long-distances for specialized medical evaluation, diagnosis and treatment. Patient Advocate Foundation www.patientadvocate.org (800) 846-4066 The Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. Patient Notification System www.patientnotificationsystem.org (888) UPDATE-U This is a program developed by the Plasma Protein Therapeutics Association (PPTA) to notify patients who receive plasma products, such as IVIG, about product recalls. Patient Services Incorporated (PSI) www.uneedpsi.org (800) 366-7741 PSI is a non-profit charitable organization dedicated to subsidizing the high cost of health insurance premiums and co-payments for persons with specific chronic illnesses, including primary immunodeficiencies. Especially for Youth Band-aids and Blackboards www.lehman.cuny.edu/faculty/jfleitas/bandaides. Band-aids and Blackboards is a Web site about growing up with medical problems. The site helps people understand what it is like, from the perspective of children and teens. There are separate areas for kids, teens and adults. KidsHealth www.kidshealth.org KidsHealth is a Web site that provides health information to kids, teens and parents. The site contains articles, animations, games and resources. National Family Caregivers Association (NCFA) www.nfcacares.org (800) 896-3650 NCFA is a grass roots organization created to educate, support, empower and speak up for millions of Americans who care for chronically ill, aged, or disabled loved ones.
Reference 143 Manufacturing Companies and Product Related Organizations Baxter Healthcare Corporation www.baxter.com & www.immunedisease.com Reimbursement Hotline: (800) 548-4448 This company manufactures Gammagard S/D and Gammagard Liquid. The Web site provides information about the company, their products, general information about primary immunodeficiency diseases and reimbursement assistance. CSL Behring www.cslbehring.com Reimbursement Services Hotline: (800) 676-4266 This company manufactures Carimune NF and Vivaglobin. The Web site provides information about the company, their products, general immunology and reimbursement assistance. Grifols USA, Inc. www.grifolsusa.com Customer Service: (888) 474-3657 This company manufactures Flebogamma. The Web site provides information about the company, Flebogamma and customer service. InterMune Pharmaceuticals, Inc. www.intermune.com Access Hotline: (877) 305-7704 This company produces ACTIMMUNE (interferon gamma-1b) Injection for the treatment of chronic granulomatous disease (CGD). The company has a reimbursement hotline and patient assistance program to help patients with insurance and reimbursement issues. Octapharma USA, Inc. www.octapharma.com (866) 766-4860 This company produces Octagam. The Web site provides information about the company and Octogam. Plasma Protein Therapeutics Association (PPTA) www.plasmatherapeutics.org (410) 263-8296 This organization is the primary advocate for the leading producers of plasma-based and related recombinant biological therapeutics. The Web site provides specific information on the quality, safety and efficacy of plasma products. General Health Issues American Dietetic Association (ADA) www.eatright.org ADA serves the public by promoting optimal nutrition, health and well-being. HealthWeb www.healthweb.org HealthWeb is a collaborative project of the health sciences libraries of the Greater Midwest Region (GMR) of the National Network of Libraries of Medicine (NN/LM) and those of the Committee for Institutional Cooperation. MayoClinic.com www.mayoclinic.com The Web site is a service of the renowned Mayo Clinic health care system and provides a wealth of information on health and medical topics. New material is added every workday and is reviewed by Mayo Clinic experts. Medline Plus www.medlineplus.gov MedlinePlus will direct you to information to help answer health questions. MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations. Pre-formulated MEDLINE searches are included in MedlinePlus and give easy access to medical journal articles. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news. PubMed Central www.pubmed.com PubMed Central is a free digital archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health (NIH) developed and managed by NIH’s National Center for Biotechnology Information (NCBI) in the National Library of Medicine (NLM). USDA Food and Nutrition Information Center www.nal.usda.gov This Web site provides general information and tips on maintaining a healthy lifestyle through good nutritional habits. WebMD www.webmd.com WebMD is a commercial Web site containing information on general health, medical and fitness issues. Talecris Biotherapeutics www.talecris.com Reimbursement Helpline: (800) 288-8374 This company manufactures Gamunex. The Web site provides information about the company, their products, links to information about primary immunodeficiency diseases and reimbursement assistance.
Page 1 and 2:
Patient & Family Handbook For Prima
Page 3 and 4:
Patient & Family Handbook For Prima
Page 5 and 6:
Patient and Family Handbook i Prefa
Page 7 and 8:
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
Page 13 and 14:
Page 15 and 16:
Page 17 and 18:
Page 19 and 20:
Common Variable Immune Deficiency c
Page 21 and 22:
Common Variable Immune Deficiency 1
Page 23 and 24:
X-Linked Agammaglobulinemia chapter
Page 25 and 26:
X-Linked Agammaglobulinemia 17 Clin
Page 27 and 28:
Selective IgA Deficiency chapter 4
Page 29 and 30:
Selective IgA Deficiency 21 Clinica
Page 31 and 32:
Severe Combined Immunodeficiency ch
Page 33 and 34:
Severe Combined Immunodeficiency 25
Page 35 and 36:
Page 37 and 38:
Page 39 and 40:
Chronic Granulomatous Disease 31 De
Page 41 and 42:
Chronic Granulomatous Disease 33 Di
Page 43 and 44:
Chronic Granulomatous Disease 35 Tr
Page 45 and 46:
Wiskott-Aldrich Syndrome 37 Definit
Page 47 and 48:
Wiskott-Aldrich Syndrome 39 Maligna
Page 49 and 50:
Wiskott-Aldrich Syndrome 41 Treatme
Page 51 and 52:
Hyper IgM Syndrome 43 Definition of
Page 53 and 54:
Hyper IgM Syndrome 45 Treatment of
Page 55 and 56:
DiGeorge Syndrome 47 Definition of
Page 57 and 58:
DiGeorge Syndrome 49 Therapy for Di
Page 59 and 60:
IgG Subclass Deficiency and Specifi
Page 61 and 62:
IgG Subclass Deficiency and Specifi
Page 63 and 64:
Ataxia Telangiectasia 55 Definition
Page 65 and 66:
Ataxia Telangiectasia 57 General Tr
Page 67 and 68:
Hyper IgE Syndrome 59 Definition of
Page 69 and 70:
Hyper IgE Syndrome 61 Inheritance o
Page 71 and 72:
Complement Deficiencies 63 Definiti
Page 73 and 74:
Complement Deficiencies 65 Treatmen
Page 75 and 76:
Other Important Primary Immunodefic
Page 77 and 78:
Other Important Primary Immunodefic
Page 79 and 80:
Inheritance chapter 15 Many disease
Page 81 and 82:
Inheritance 73 Types of Inheritance
Page 83 and 84:
Inheritance 75 Types of Inheritance
Page 85 and 86:
Inheritance 77 Reproductive Options
Page 87 and 88:
Laboratory Tests chapter 16 Laborat
Page 89 and 90:
Laboratory Tests 81 Major Categorie
Page 91 and 92:
Laboratory Tests 83 Summary Laborat
Page 93 and 94:
General Care 85 General Health Meas
Page 95 and 96:
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 and 148: Reference 139 NIH Clinical Trials w
Page 149: Reference 141 International Patient
Page 153 and 154: Reference 145 Books For Youth Balkw
Page 156: This publication has been made poss
show all

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

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?