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Related Links
We have compiled a list of websites involved with Primary Immunodeficiency that may be of interest to you. Please use our Table of Contents to find the site you need.
PI Related Organizations and Foundations
Health and Government Related Agencies
Funding Opportunities for Patient Groups
Funding Opportunities for Physicians
Pharmaceutical Companies and Plasma Manufacturers
PI Related Organizations and Foundations Top Top   
American Academy of Allergy, Asthma & Immunology
555 East Wells Street
Suite 1100
Milwaukee, WI 53202
Phone: (414) 272-6071
Patient Information and Physician Referral Line: (800) 822-2762
American Academy of Allergy, Asthma & Immunology
Website: http://www.aaaai.org
American Academy of Pediatrics
141 NorthWest Point Blvd.
Elk Grove Village, IL 60007-1098
(847) 434-4000
American Academy of Pediatrics
Website: http://www.aap.org
Chronic Granulomatous Disease Association
2616 Monterey Rd.
San Marino, CA 91108-1646
(626) 441-4118
Chronic Granulomatous Disease Association
Website: http://www.cgdassociation.org/
Clinical Immunology Society
611 E. Wells Street
Milwaukee, WI 53202
(414) 224-8095
Clinical Immunology Society
Website: http://www.clinimmsoc.org/
Coordination of Rare Diseases at Sanford (CoRDS)
Sanford Children's Health Research Center
2301 E 60th Street N | Sioux Falls, SD | 57104
p| 605.312.6413
Coordination of Rare Diseases at Sanford (CoRDS)
Website: http://www.sanfordresearch.org/cords
Dina LaVigna Breath of Life Fund
5699 Kanan Road 443
Agoura Hills, CA 91301
(818) 889-1865
Dina LaVigna Breath of Life Fund
Website: http://www.triforlife.com
Diseases Conditions.com
Diseases Conditions.com
Website: http://www.diseasesconditions.com
Focis
555 East Wells Street
Milwaukee, WI 53202
Phone: (414) 918-3192
Fax: 414/272-6070
Email: focis@execinc.com
Focis
Website: http://www.focisnet.org
Grupo Latinoamericano de Inmunodeficiencias Primarias (LAGID)
Latin American Group for Primary Immondeficiency
Department of Pediatrics
LSU Health Sciences Center
1542 Tulane Avenue
New Orleans, LA 70112-2822
Grupo Latinoamericano de Inmunodeficiencias Primarias (LAGID)
Website: http://www.lagid.lsuhsc.edu
I.G. Living Magazine
41093 County Center Drive
Temecula, CA 92591
800-847-7477
Email: info@igliving.com
I.G. Living Magazine
Website: http://igliving.com
Immune Deficiency Foundation (IDF)
40 W. Chesapeake Avenue, Suite 308
Towson, MD 21204
(800) 296-4433
Immune Deficiency Foundation (IDF)
Website: http://www.primaryimmune.org
International Patient Organization for Patients with Primary Immunodeficiencies (IPOPI)
Firside
Main Road
Downderry, Cornwall
PL11 3LE, United Kingdom
Tel (+44) 01503 250 668 / Fax (+44) 01503 250 668
International Patient Organization for Patients with Primary Immunodeficiencies (IPOPI)
Website: http://www.ipopi.org
Iranian Primary Immunodeficiency Association (PiA)
Iranian Primary Immunodeficiency Association (PiA)
Website: http://www.iranianpia.org/index2.htm
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
(888) Modimes (663-4637)
March of Dimes Birth Defects Foundation
Website: http://www.modimes.org
New England Primary Immunodeficiency Network (NEPIN)
P.O Box 692
Atkinson, NH 03811
New England Primary Immunodeficiency Network (NEPIN)
Website: http://www.nepin.org
Patient and Family Handbook for The Primary Immune Deficiency Diseases
IDF (Immune Deficiency Foundation)
40 W. Chesapeake Avenue, Suite 308
Towson, MD 21204
(800) 296-4433
Patient and Family Handbook for The Primary Immune Deficiency Diseases
Website: http://www.primaryimmune.org/publications/book_pats/book_pats.htm
Patient Services Incorporated (PSI)
PSI is a national non-profit organization developed to support persons with specific chronic medical illnesses by assisting them with health insurance premiums and pharmacy co-payments in order to help improve their quality of life.

P.O. Box 162
Midlothian, VA 23113-1602
Ph: (804) 744-3813
Toll-free: (800) FON-PSI1, (800) 366-7741
Fax: (804) 744-5407
Email: uneedpsi@uneedpsi.org
Patient Services Incorporated (PSI)
Website: http://www.uneedpsi.org
Plasma Protein Therapeutics Association (PPTA)
147 Old Solomons Island Road
Suite 100
Annapolis MD 21401 USA
(410) 263-8296
Plasma Protein Therapeutics Association (PPTA)
Website: http://www.pptaglobal.org
Primary Immunodeficiency Association (PIA)
Alliance House
12 Caxton Street
London SW1H0QS
44 02 07 976 7640
Primary Immunodeficiency Association (PIA)
Website: http://www.pia.org.uk
Primary Immunodeficiency Association of Ireland (PIAI)
Tel: Tel: 055-29133.
Fax: 055-29450
Email: info@piai.ie
Primary Immunodeficiency Association of Ireland (PIAI)
Website: http://www.irishhealth.com/psg/immun.html
Primary Immunodeficiency UK
Primary Immunodeficiency UK (PID UK)
Tel: 44 0800 987 8986
Email: hello@piduk.org
Primary Immunodeficiency UK
Website: http://www.piduk.org/
The Painted Turtle
The Painted Turtle, located in Lake Huges, California is one of six Paul Newman's Family of "Hole in the Wall" Camps for seriously ill children. The camp and year round programs provide activities scheduled by illness for children ages 7 to 16 to develop self esteem, self awarness and self fullfillment.
The Painted Turtle
Website: http://www.thepaintedturtle.org
Health and Government Related Agencies Top Top   
Centers for Disease Control and Prevention (CDC)
1600 Clifton Road
Atlanta, GA 30333
Public Inquires (800) 311-3435
Centers for Disease Control and Prevention (CDC)
Website: http://www.cdc.gov
Centers for Medicare and Medicaid Services (CMS)
CMS is the federal agency that administers Medicare, Medicaid and the State Children's Health Insurance Program (SCHIP). Their web site provides detailed information on these services
Centers for Medicare and Medicaid Services (CMS)
Website: http://www.cms.hhs.gov/
Correlagen Diagnostics, Inc.
222 Third Street
Suite 1100
Cambridge, MA 02142
(617) 577-0152
Email- testing@correlagen.com
Correlagen Diagnostics, Inc.
Website: http://www.correlagen.com
Health Insurance Resource Center for Families, Individuals and the Self-Employed
For a list of State Departments of Insurance, the State Insurance Commissioners and other general information on health insurance
Health Insurance Resource Center for Families, Individuals and the Self-Employed
Website: http://www.healthinsurance.org/
Institute for Health Care Research and Policy
Georgetown Health Policy Institute
For a state specific "Consumer Guide for Getting and Keeping Health Insurance"
Institute for Health Care Research and Policy
Website: http://www.healthinsuranceinfo.net/
MEDLINEplus
U.S. National Library of Medicine
(888) FIND-NLM
MEDLINEplus
Website: http://medlineplus.gov
National Cancer Institute
NCI Public Inquiries Office
6116 Executive Boulevard
Room 3036A
Bethesda, MD 20892-8322
(800) 422-6237
Email: cancergovstaff@mail.nih.gov
National Cancer Institute
Website: http://www.nci.nih.gov
National Heart, Lung and Blood Institute
NHLBI Health Information Center
Attention: Web Site
P.O. Box 30105
Bethesda, MD 20824-0105
(301) 592-8573
National Heart, Lung and Blood Institute
Website: http://www.nhlbi.nih.gov/
National Human Genome Research Institute
Communications and Public Liaison Branch
National Institutes of Health
Building 31, Room 7A-4B09
31 Center Drive, MSC 2152
9000 Rockville Pike
Bethesda, MD 20892
(301) 402-0911
(301) 402-2218- Fax
National Human Genome Research Institute
Website: http://www.genome.gov
National Institute of Allergy and Infectious Diseases
National Institute of Health
6610 Rockledge Dr.
MSC 66121
Bethesda, MD 20892
(301) 496-5717
National Institute of Allergy and Infectious Diseases
Website: http://www3.niaid.nih.gov
National Institute of Child Health and Human Development
National Institute of Child Health and Human Development
Building 31, Room 2A32, MSC 2425
31 Center Drive
Bethesda, MD 20892-2425
(800) 370-2943
National Institute of Child Health and Human Development
Website: http://www.nichd.nih.gov
National Institutes of Health (NIH)
9000 Rockville Pike
Bethesda, MD 20892-2425
(301) 496-4000
National Institutes of Health (NIH)
Website: http://www.nih.gov
National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
(888) FIND-NLM
National Library of Medicine
Website: http://www.nlm.nih.gov
National Marrow Donor Program
The National Marrow Donor Program (NMDP) helps people who need a life-saving marrow or blood cell transplant. They connect patients, doctors, donors and researchers to resources they need to help more people live longer, healthier lives. The site also includes a patient Financial Guide for information covering the cost of this expensive treatment
National Marrow Donor Program
Website: http://www.marrow.org/PATIENT/Plan_for_Tx/Planning_for_Tx_Costs/Mapping_the_Maze/
National Office of Public Health Genomics
Centers for Disease Control and Prevention (CDC)
4770 Buford Highway Mailstop K-89
Atlanta, GA 30341
National Office of Public Health Genomics
Website: http://www.cdc.gov/genomics/
National Organization for Rare Diseases (NORD) Medication Assistance Programs
This organization administers specific medication assistance programs for uninsured or under-insuranced individuals with rare diseases
National Organization for Rare Diseases (NORD) Medication Assistance Programs
Website: http://www.rarediseases.org/programs/medication
Patient Advocate Foundation
Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis througj case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability
Patient Advocate Foundation
Website: http://www.patientadvocate.org
Patient Notification System
The Patient Notification System is a free, confidential, 24 hour communication system providing information on plasma-derived and recombinant analog therapy withdrawals and recalls. The system was created to provide consumers with a single, convenient, and confidential source for up-to-date withdrawal and recall information
Patient Notification System
Website: http://www.patientnotificationsystem.org/
PubMed- National Library of Medicine
U.S. National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
PubMed- National Library of Medicine
Website: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
Rare Disease Clinical Research Network (RDCRN)
The Rare Diseases Clinical Research Network (RDCRN) is made up of 19 distinctive consortia that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. The RDCRN also aims to provide up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities
Rare Disease Clinical Research Network (RDCRN)
Website: http://RareDiseasesNetwork.org
Funding Opportunities for Patient Groups Top Top   
International Patient Organization for Primary Immunodeficiencies (IPOPI)
A global patient organisation working to improve the quality of life for people with primary immunodeficiencies.

For information on their National Member Organization (NMO) development fund, please visit the link below.
International Patient Organization for Primary Immunodeficiencies (IPOPI)
Website: http://www.ipopi.org/
World Immunodeficiency Network (WIN) Grants Program for Patient Organizations
Jeffrey Modell Foundation
The Jeffrey Modell Foundation provides direct funding to patient organizations through the World Immunodeficiency Network (WIN), in order to support a stronger and more unified voice for patients with PI.

To learn more about WIN, please click on the website link below.
World Immunodeficiency Network (WIN) Grants Program for Patient Organizations
Website: http://www.info4pi.org/win/
Funding Opportunities for Physicians Top Top   
Exploratory/Developmental Investigations on Primary Immunodeficiency Diseases (R03) - PAR-07-447
National Institutes of Health (NIH)
A funding opportunity to support small grants in Primary Immunodeficiency diseases. Budgets for direct costs up to $50,000 per year and a project duration of up to two years may be requested for a maximum of $100,000 direct costs over a two-year project period. This funding opportunity is co-sponsored by NIAID, NICHD, and NHLBI of the National Institutes of Health (NIH). Runs in parallel with FOA PAR-07-446.

For a complete description of the grants program, including the application and review process, please visit the website link below.
Exploratory/Developmental Investigations on Primary Immunodeficiency Diseases (R03) - PAR-07-447
Website: http://grants.nih.gov/grants/guide/pa-files/PAR-07-447.html
Exploratory/Developmental Investigations on Primary Immunodeficiency Diseases (R21) - PAR-07-446
National Institutes of Health (NIH)
A funding opportunity to support innovative exploratory/developmental investigations in Primary Immunodeficiency diseases. Direct costs are limited to $275,000 over an R21 two-year period, with no more than $200,000 in direct costs allowed in any single year. This funding opportunity is co-sponsored by NIAID, NICHD, and NHLBI of the National Institutes of Health (NIH). Runs in parallel with FOA PAR-07-447.

For a complete description of the grants program, including the application and review process, please visit the website link below.
Exploratory/Developmental Investigations on Primary Immunodeficiency Diseases (R21) - PAR-07-446
Website: http://grants.nih.gov/grants/guide/pa-files/PAR-07-446.html
Investigations in Primary Immunodeficiency (R01) - PAR-08-206
National Institutes of Health (NIH)
A funding opportunity for innovative investigations in Primary Immunodeficiency diseases. This funding opportunity is co-sponsored by NIAID, NICHD, NIDDK, and NINDS of the National Institutes of Health (NIH).

For a complete description of the grants program, including the application and review process, please visit the website link below.
Investigations in Primary Immunodeficiency (R01) -  PAR-08-206
Website: http://grants.nih.gov/grants/guide/pa-files/PAR-08-206.html
Mount Sinai School of Medicine Fellowship Training Program in Allergy and Immunology
Mount Sinai School of Medicine
This ACGME-accredited fellowship program offers three-year pre- or post-doctoral fellowships in Primary Immunodeficiency diseases. This fellowship is funded by the Jeffrey Modell Foundation for the purpose of providing funding research and/or clinical care in the area of Primary Immunodeficiency disease. This program's primary goal is to prepare candidates for careers in immunology, by providing a broad-based experience in clinical medicine and scientific inquiry. The fellowship consists of one primarily clinical year followed by two years mainly devoted to a substantial research project emphasizing a basic science, translational, or clinical subject with dedicated time for clinical electives.

For a complete description of the fellowship program, please visit the website link below.
Mount Sinai School of Medicine Fellowship Training Program in Allergy and Immunology
Website: http://icahn.mssm.edu/
Octapharma Grant Program
Octapharma
The Octapharma Grants Program was founded in recognition of their milestone 25th Anniversary. The goal of the grants program is to support the highest quality academic research proposals with the greatest potential for impact in current/future clinical practice.
For a complete description of the grants program, including the application and review process, please visit the website link below.

Octapharma Grant Program
Website: http://www.octapharmagrants.com/grant-application-process.cfm
The Robert A. Good/ Jeffrey Modell Fellowship in Transplantation and Immunodeficiency
Jeffrey Modell Foundation
The Robert A. Good/Jeffrey Modell Fellowship in Transplantation and Immunodeficiency is an international Fellowship program with a clear mandate to fund the brightest investigators focused on Primary Immunodeficiency and stem cell transplantation. The Fellowship program will honor one of our greatest teachers of the last century, Dr. Robert A. Good, and his patient, Jeffrey Modell. Four Fellowships have been awarded to date.

For the Fellowship program description and application, please contact:

Professor Chaim Roifman MD, FRCP
The Hospital for Sick Children
Division of Immunology/Allergy
555 University Avenue
Room 7277 Elm
Toronto, ON, M5G 1X8
Email: chaim.roifman@sickkids.ca
Tel: (416) 813 - 8626
The Robert A. Good/ Jeffrey Modell Fellowship in Transplantation and Immunodeficiency
Website: http://www.info4pi.org
Pharmaceutical Companies and Plasma Manufacturers Top Top   
Baxter Healthcare Corporation
Baxter International Inc.
One Baxter Parkway
Deerfield, IL 60015-4633
(800) 4-BAXTER (422-9837)
The GARDian Program: (877) 655 - GARD (4273)
Medical Affairs: (866) 4BIOSCI (424-6724)

Related Link - Research


Baxter Healthcare Corporation
Website: http://www.baxter.com, http://baxterbiotherapeutics.com/global/index.html, www.gammagardliquid.com, www.immunedisease.com, www.mygardian.com/gardian/
CSL Behring
1020 First Avenue
CSL Behring
King of Prussia, PA 19406
Customer Support: (800) 683-1288
Reimbursement: (800) 676-4266
CSL Behring
Website: http://cslbehring.com
Grifols
Grifols, USA
2410 Lillyvale Avenue
Los Angeles, CA 90032
(888) 325-8579
Customer Support Center: (888) 325-8579

Related Link:
Victor Grifols selected as “Business Leader of the Year 2011” by the Spain - U.S. Chamber of Commerce

Grifols
Website: http://www.grifols.com/
ImmuneDisease.com
Baxter International Inc.
Baxter BioScience
One Baxter Parkway
Deerfield, IL 60015
Customer Service: (800) 423-2090
Gammassist Program: (888) 229-8379
Reimbursement Hotline: (800) 548-4448
ImmuneDisease.com
Website: http://www.immunedisease.com/
InterMune
3280 Bayshore Blvd.
Brisbane, CA 94005
Tel: (415) 466-2200
Fax: (415) 466-2300
InterMune
Website: http://www.intermune.com
Octapharma
5885 Trinity Parkway
Suite 350
Centreville, VA 20120
(703) 766-4860
Octapharma
Website: http://www.octapharma.com
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