| Location |
Description |
Immune Deficiency Foundation (IDF)
www.primaryimmune.org
Telephone: (800) 296-4433 |
The national non-profit organization dedicated
to improving the lives of individuals affected by primary immunodeficiency disease through research
and education. |
International Patient Organization for Primary Immunodeficiencies (IPOPI)
www.ipopi.org
|
IPOPI is an international organization whose
members are national patient organizations for the primary immune deficiencies. The web site
provides general information on PID and resource contacts for patients and professionals
worldwide. |
Primary Immunodeficiency Association (PIA), United Kingdom
www.pia.org.uk
|
PIA is a patient organization that provides
services for individuals affected by primary immune deficiencies in the United Kingdom. The web
site contains a wealth of information about primary immune deficiency diseases. |
The Jeffrey Modell Foundation
www.jmfworld.org
Telephone: (800) JEFF-844 |
A non-profit research foundation devoted to
primary immune deficiency diseases. |
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Disease Specific Patient Groups and
Organizations
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Ataxia Telangiectasia (A-T) Children's Project
www.atcp.org
|
A non-profit organization dedicated to
accelerating the research toward a cure for Ataxia Telangiectasia. They also provide educational
literature on AT |
Chronic Granulomatous Disease (CGD) Home Page
www.magicbydesign.com/cgd/index.php
|
A web site designed to provide information about
Chronic Granulomatous Disease. Periodic chat sessions are held for members of the group. |
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Hereditary Angioedema Association
www.hereditaryangioedema.com
|
An organization dedicated to providing education about Hereditary Angioedema or C1 Inhibitor
Deficiency Disorder. |
Severe Combined Immunodeficiency
(SCID) Home Page
www.scid.net
|
A web site designed to provide information about Severe Combined Immunodeficiency Disease.
The site includes an email listserve for parents to talk with others about this disorder. |
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Centers for Disease Control and Prevention, National Immunization Program
www.cdc.gov/nip/
Telephone: (888) CDC-FAXX |
This division of the CDC provides information on
general vaccinations and specific precautions for individuals affected with primary immune
deficiencies. |
Center for Biologics Evaluation and Research, FDA
www.fda.gov/cber/index.html
Telephone: (800) 835-4709 |
A division of the Food and Drug Administration
(FDA) whose mission is to protect and enhance public health through regulation of biological
products to ensure their safety, effectiveness and timely delivery to patients. This agency
provides information on biological products, such as blood and plasma, including new product
approvals, adverse events, product recalls and withdrawals. |
National Institutes of Health (NIH)
www.nih.gov/health
|
This organization provides information on a
national level about the advances in health, science and medical issues. |
NIH Clinical Trials
www.clinicaltrials.gov
Clinical Trials Telephone: (800) 411-1222 |
The web site contains current information on
clinical trials being conducted, some of which may be pertinent to primary immune
deficiencies. |
National Institute of Child Health and Human Development (NICHD)
www.nichd.nih.gov
Telephone: (877) 696-6775 |
A division of the NIH that provides general
information on children's health issues, including an in-depth booklet on primary immune
deficiencies. |
U.S. Department of Health and Human Services (HHS)
www.dhhs.gov
Telephone: (877) 696-6775 |
This organization is the U.S. government's
principal agency for protecting the health of all Americans and providing essential human services.
The web site contains information on the departments numerous federal programs. |
U.S. Department of Labor, Employment Standards Administration, Wage and Hour
Division
www.dol.gov
Telephone: 1-866-4-USA-DOL (1-866-487-2365) TTY: 1-877-889-5627 |
The U.S. Department of Labor's Employment
Standards Administration, Wage and Hour Division, administers and enforces the Family and Medical
Leave Act (FMLA) for all private, state and local government employees, and some federal employees.
FMLA entitles eligible employees to take up to 12 weeks of unpaid, job-protected leave in a
12-month period for specified family and medical reasons. Detailed information about FMLA is
available at this web site. |
Centers for Medicare and Medicaid Services
www.cms.hhs.gov
|
This organization 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 contains the 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, which can be helpful in seeking health
insurance assistance. |
National Institute of Allergy and Infectious Diseases (NIAID)
www.niaid.nih.gov
Office of Communications Telephone: (301) 496-5717 |
This organization is a division of NIH that
provides information about allergy and infectious diseases, and primary immune deficiencies to the
public. |
U.S. Equal Employment Opportunity Commission (EEOC)
www.eeoc.gov
Telephone: (800) 669-4000 |
The federal agency whose mission is to promote
equal opportunity in employment through administrative and judicial enforcement of the federal
civil rights laws and through education and technical assistance. The web site contains information
on the agency, its current activities and legislative documents such as "The Americans with
Disabilities Act," which protects civil rights in the areas of employment, public accommodation,
transportation and telecommunications for people with disabilities, including developmental
disabilities. |
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Medical Society Organizations
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American Academy of Allergy, Asthma, and Immunology (AAAAI)
www.aaaai.org
Telephone: (414) 272-6071
Physician Referral: (800) 822-2762 |
AAAAI is a professional organization for physicians who treat patients with allergies, asthma
and immunologic disorders. Provides a worldwide referral system for physicians in various
geographical regions. |
American Association of Immunologists (AAI)
www.aai.org/
Telephone: (301) 634-7178
|
The American Association of Immunologists (AAI) is a professional association representing
basic research scientists whose main professional focus is in the field of
immunology.
|
Clinical Immunology Society
www.clinimmsoc.org
Telephone: (414) 224-8095 |
The Clinical Immunology Society mission 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. |
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International Patient Organizations
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Canadian Immunodeficiencies Patient Organization (CIPO)
www.cipo.net
|
CIPO is the Canadian organization for primary
immune deficiency diseases. Their web site provides general information on these disorders and
contact information to become a member. |
International Patient Organization for Primary Immunodeficiencies (IPOPI)
www.ipopi.org
|
IPOPI is an international organization whose members are national patient organizations for
the primary immune deficiencies. The web site provides general information on PID and resource
contacts for patients and professionals worldwide. |
LAGID: Latin American Group for Primary Immunodeficiencies
www.boletin-lagid.Isumc.edu
|
A professional organization comprised of physicians from various Latino countries who are
dedicated to promoting the awareness, diagnosis and treatment of primary immune deficiency diseases
in these countries. |
Primary Immunodeficiency Association (PIA), United Kingdom
www.pia.org.uk
|
PIA is a patient organization that provides services for individuals affected by primary
immune deficiencies in the United Kingdom. The web site contains a wealth of information about
primary immune deficiency diseases. |
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Education Issues
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HEATH Resource Center
www.heath-resource-center.org
Telephone: (800) 544-32284 |
This organization is the national clearinghouse
on post secondary 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 post secondary training sites. |
National Information Center for Handicapped Children and Youth
www.nichcy.org
Telephone: (800) 695-0285 |
This organization 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. |
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Patient Advocacy and Support Organizations
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Children's Defense Fund
www.childrensdefense.org
|
A non-profit organization devoted to children's
issues, including the Children's Health Insurance Program (CHIP). The web site provides information
on these topics. |
Invisible Disabilities Advocate
www.invisibledisabilities.com
|
This web site is designed to assist family and
friends of affected individuals in understanding disabling illness and injury. Invisible
Disabilities Advocate (IDA) provides helpful links to sites and organizations, and a support board
for sufferers and their loved ones. |
National Family Caregivers Association (NCFA)
www.nfcacares.org
Telephone: (800) 896-3650 |
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. |
National Organization for Rare Disorders (NORD)
www.rarediseases.org
Telephone: (800) 999-NORD |
This is a non-profit organization that provides
information, programs and services for thousands of rare medical conditions, including primary
immune deficiencies. |
Patient Advocate Foundation
www.patientadvocate.org
Telephone: (800) 532-5274 |
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 discrimination and/or debt crisis matters relative to their diagnosis through case
managers, doctors and attorneys. |
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Patient Notification System
www.patientnotificationsystem.org
Telephone: (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. |
