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| 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. |
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| PI Related Organizations and Foundations |
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| Health and Government Related Agencies |
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| Funding Opportunities for Patient Groups |
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| Funding Opportunities for Physicians |
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| Pharmaceutical Companies and Plasma Manufacturers |
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| PI Related Organizations and Foundations |
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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
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Website: http://www.aaaai.org
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American Academy of Pediatrics
141 NorthWest Point Blvd.
Elk Grove Village, IL 60007-1098
(847) 434-4000
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Website: http://www.aap.org
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Ataxia Telangiectasis Society
A-T Society
IACR-Rothamsted
Harpenden
Herts
AL5 2JQ
United Kingdom
Tel: +44 (0)1582 760733 | Fax:+44 (0)1582 760162
e-mail: atsociety@btconnect.com
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Website: http://www.atsociety.org.uk
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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
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Website: http://www.lagid.lsuhsc.edu
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I.G. Living Magazine
41093 County Center Drive
Temecula, CA 92591
800-847-7477
Email: info@igliving.com
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Website: http://igliving.com
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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
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Website: http://www.ipopi.org
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Joint Council of Allergy, Asthma and Immunology
Practice Parameter for the Diagnosis and
Management of Primary Immunodeficiency
May 2005 Volume 94, Number 5, Supplement I
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Website: http://www.jcaai.org
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March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
(888) Modimes (663-4637)
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Website: http://www.modimes.org
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New England Primary Immunodeficiency Network (NEPIN)
P.O Box 692
Atkinson, NH 03811
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Website: http://www.nepin.org
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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
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Website: http://www.uneedpsi.org
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Plasma Protein Therapeutics Association (PPTA)
147 Old Solomons Island Road
Suite 100
Annapolis MD 21401 USA
(410) 263-8296
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Website: http://www.pptaglobal.org
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Primary Immunodeficiency Association (PIA)
Alliance House
12 Caxton Street
London SW1H0QS
44 02 07 976 7640
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Website: http://www.pia.org.uk
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Primary Immunodeficiency Association of Ireland (PIAI)
Tel: Tel: 055-29133.
Fax: 055-29450
Email: info@piai.ie
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Website: http://www.piai.ie
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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.
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Website: http://www.thepaintedturtle.org
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| Health and Government Related Agencies |
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An information portal for rare diseases, medicines - orphans
Exchange of information and interaction between patients, their relatives, medical and social workers, representatives of public authorities, science and business to improve life and social adaptation of patients with rare diseases, development of domestic science, the country's prosperity
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Website: http://www.rarediseases.ru
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Centers for Disease Control and Prevention (CDC)
1600 Clifton Road
Atlanta, GA 30333
Public Inquires (800) 311-3435
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Website: http://www.cdc.gov
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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
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Website: http://www.cms.hhs.gov/
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Correlagen Diagnostics, Inc.
222 Third Street
Suite 1100
Cambridge, MA 02142
(617) 577-0152
Email- testing@correlagen.com
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Website: http://www.correlagen.com
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Families USA
Families USA is a national nonprofit organization dedicated to the achievement of high-quality, affordable health care for all Americans.
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Website: http://www.familiesusa.org
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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
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Website: http://www.healthinsurance.org/
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Immune Disease Institute
800 Huntington Avenue
Boston, Massachusetts 02115
(617) 278-3000
(617) 278-3643 (fax)
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Website: http://www.cbrinstitute.org
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Institute for Health Care Research and Policy
Georgetown Health Policy Institute
For a state specific "Consumer Guide for Getting and Keeping Health Insurance"
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Website: http://www.healthinsuranceinfo.net/
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National Cancer Institute
NCI Public Inquiries Office
6116 Executive Boulevard
Room 3036A
Bethesda, MD 20892-8322
(800) 422-6237
Email: cancergovstaff@mail.nih.gov
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Website: http://www.nci.nih.gov
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National Heart, Lung and Blood Institute
NHLBI Health Information Center
Attention: Web Site
P.O. Box 30105
Bethesda, MD 20824-0105
(301) 592-8573
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Website: http://www.nhlbi.nih.gov/
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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
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Website: http://www.genome.gov
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National Institute of Allergy and Infectious Diseases
National Institute of Health
6610 Rockledge Dr.
MSC 66121
Bethesda, MD 20892
(301) 496-5717
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Website: http://www3.niaid.nih.gov
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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
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Website: http://www.nichd.nih.gov
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National Institutes of Health (NIH)
9000 Rockville Pike
Bethesda, MD 20892-2425
(301) 496-4000
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Website: http://www.nih.gov
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National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
(888) FIND-NLM
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Website: http://www.nlm.nih.gov
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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
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Website: http://www.marrow.org/PATIENT/Plan_for_Tx/Planning_for_Tx_Costs/Mapping_the_Maze/
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National Office of Public Health Genomics
Centers for Disease Control and Prevention (CDC)
4770 Buford Highway Mailstop K-89
Atlanta, GA 30341
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Website: http://www.cdc.gov/genomics/
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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
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Website: http://www.rarediseases.org/programs/medication
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NOAH: New York Online Access to Health
Patricia Gallagher
Chair, Content Committee
New York Academy of Medicine
1215 Fifth Avenue
New York, NY 10029
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Website: http://www.noah-health.org
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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
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Website: http://www.patientadvocate.org
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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
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Website: http://www.patientnotificationsystem.org/
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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
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Website: http://RareDiseasesNetwork.org
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| Funding Opportunities for Patient Groups |
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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.
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Website: http://www.ipopi.org/
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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.
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Website: http://www.info4pi.org/win/
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| Funding Opportunities for Physicians |
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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.
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Website: http://grants.nih.gov/grants/guide/pa-files/PAR-07-447.html
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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.
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Website: http://grants.nih.gov/grants/guide/pa-files/PAR-07-446.html
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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.
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Website: http://grants.nih.gov/grants/guide/pa-files/PAR-08-206.html
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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.
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Website: http://www.mssm.edu/fellowships/allergy_immunology/training.shtml
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Octapharma Grants Program
Octapharma USA
Octapharma USA has launched the Octapharma 25th Anniversary Grants Program to support clinical or pre-clinical research in the areas of Immunotherapy, Emergency Medicine and Hemophilia. This grants program is only available to researchers based in the United States.
For a complete description of the grants program, including the application and review process, please visit the website link below.
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Website: http://www.octapharmagrants.com
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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
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Website: http://www.info4pi.org
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| Pharmaceutical Companies and Plasma Manufacturers |
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Baxter Healthcare Corporation
Baxter International Inc.
One Baxter Parkway
Deerfield, IL 60015-4633
(800) 4-BAXTER (422-9837)
Gammassist: (888) 229-8379
Reimbursement Hotline: (800) 548-4448
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Website: http://www.baxter.com
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Coram, Inc.
1675 Broadway Ste 900
Denver, CO 80202
Phone Number: CASEDirect 800-423-1411
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Website: http://www.coramhc.com
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Grifols
Grifols, USA
2410 Lillyvale Avenue
Los Angeles, CA 90032
(888) 325-8579
Customer Support Center: (888) 325-8579
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Website: http://www.grifols.com/
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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
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Website: http://www.immunedisease.com/
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InterMune
3280 Bayshore Blvd.
Brisbane, CA 94005
Tel: (415) 466-2200
Fax: (415) 466-2300
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Website: http://www.intermune.com
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Talecris Biotherapeutics
4101 Research Commons
79 T.W. Alexander Drive
North Carolina, USA 27709
(800) 234-4153
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Website: http://www.talecris.com
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