Resource Links

Information about Primary Immune Deficiency Diseases

Immune Deficiency Foundation (IDF)

www.primaryimmune.org
Telephone: (800) 296-4433
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.

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 Immune Deficiency Treatment Consortium (PIDTC)

www.rarediseasesnetwork.org/cms/PIDTC
The Primary Immune Deficiency (PID) Treatment Consortium (PIDTC) consists of 42 centers in North America whose shared goal is to improve the outcome of patients with rare, life threatening, inherited disorders of the immune system.

The Jeffrey Modell Foundation

www.jmfworld.org
Telephone: (800) JEFF-844
A non-profit research foundation devoted to primary immune deficiency diseases.

Disease Specific Patient Groups and Organizations

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 Association (CGDA)

www.cgdassociation.org
The CGD Association is an international, non-profit group for patient support and promoting research into a cure for CGD.

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.

Federal Organizations

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.

MedWatch

www.fda.gov/Safety/MedWatch/
The FDA Safety Information and Adverse Event Reporting Program.

Vaccine Adverse Events Reporting System (VAERS)

vaers.hhs.gov
The Vaccine Adverse Event Reporting System (VAERS) is a national vaccine safety surveillance program co-sponsored by the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA).

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.

Medical Society Organizations

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 (CIS)

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.

Federation of Clinical Immunology Societies (FOCiS)

www.focisnet.org
The Federation of Clinical Immunology Societies (FOCIS) exists to improve human health through immunology by fostering interdisciplinary approaches to both understand and treat immune-based diseases.

International Patient Organizations

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.

European Society for Immunodeficiencies (ESID)

esid.org
The European Society for immunodeficiency (ESID) is a non for profit association striving to improve the knowledge in the field of Primary Immunodeficiency (PID) by encouraging research, developing educational programs and fostering cooperation among all those involved in the diagnosis, treatment and management of these diseases.

LAGID: Latin American Group for Primary Immunodeficiencies

www.lagid.lsuhsc.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.

Education Issues

HEATH Resource Center

www.heath.gwu.edu
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.

Patient Advocacy and Support Organizations

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.

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.