Several organizations are there to offer patients and family members education, support and opportunities to participate in research about alpha 1 antitrypsin deficiency.
Alpha 1 National Association
The Alpha-1 National Association offers a telephone hotline (1-800-4ALPHA-1), a national newsletter (Alpha-1 News), and local support groups that provide information and support for patients, their families, and their caregivers.
3300 Ponce de Leon Blvd.
Coral Gables, FL 33134 USA
Phone: (305) 567-9888
Alpha-1 Research Registry
The Alpha-1 Research Registry (A1RR) is a confidential database of individuals diagnosed with, or identified as carriers of, alpha-1 antitrypsin deficiency. The registry was established in 1997 by the Alpha-1 Foundation to facilitate research toward improved treatment and, ultimately, a cure for this disorder. It is located at the Medical University of South Carolina in Charleston.
c/o Medical University of South Carolina
96 Jonathan Lucas St., Suite 812-CSB, MSC 630
Charleston, SC 29425-6300 USA
Phone: (843) 792-0260
Toll-free: (877) 886-2383
American Liver Foundation
The American Liver Foundation is a national, voluntary, non-profit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education and advocacy. Established in 1976, ALF provides a national help line, educational information and programs, physician referrals, extensive scientific research grants, and a nationwide network of chapters and support groups.
39 Broadway, Suite 2700
New York, NY 10006 USA
Toll-free: (800) 465-4837
American Lung Association
The American Lung Association (ALA) is a national, non-profit, voluntary health organization dedicated to the prevention, cure, and control of all types of lung disease such as asthma, emphysema, tuberculosis, and lung cancer. This is accomplished through programs of community service, public health education, advocacy, and research. The ALA was established in 1904 as the National Association for the Study and Prevention of Tuberculosis.
As the number of tuberculosis cases declined over the years, the association widened its focus to include other forms of lung disease and, in 1973, changed its name to the American Lung Association. The association offers assistance through support groups, genetic counseling, patient networking, referrals, and the development and dissemination of educational materials. Such materials include reports, brochures, audiovisual aids, and Spanish language materials.
1301 Pennsylvania Ave NW
Washington, DC 20004 USA
Phone: (202) 785-3355
Toll-free: (800) 586-4872
Childhood Liver Disease Research and Education Network
The Childhood Liver Disease Research and Education Network (ChiLDREN) is a non-profit, collaborative team of doctors, nurses, research coordinators, medical facilities and patient support organizations, all working together to perform important research in 8 rare cholestatic childhood liver diseases, to educate and train physicians and scientists, and to provide important information about the diseases to parents, patients and the public. The ChiLDREN Network has clinical sites and research labs in the US and Canada, and also includes a research lab in London. These sites are working together to improve the lives of children and families dealing with rare liver diseases. The ChiLDREN Network combines the Biliary Atresia Research Consortium (BARC) and the Cholestatic Liver Disease Consortium (CLiC), as well as new studies on cystic fibrosis liver disease (CFLD). The ChiLDREN Network was developed to support the discovery of new diagnostics, etiologic, and treatment options for children with liver disease, and those who undergo liver transplantation. The Network also supports training for the next generation of investigators in rare, pediatric liver diseases.
c/o Joan M. Hines, Research Administrator
Children’s Hospital Colorado
Aurora, CO 80045
Phone: (720) 777-2598
Email: [email protected]
Children’s Liver Disease Foundation
Children’s Liver Disease Foundation (CLDF) is a UK charity which takes action against the effects of childhood liver disease, providing information, emotional support, research funds and a voice for all affected children, young people and families in the United Kingdom.
36 Great Charles Street
Birmingham, B3 3JY United Kingdom
Phone: (121) 212-3839
Email: [email protected]
The COPD-ALERT is a non-profit organization that offers a nationwide support and advocacy group for patients suffering from chronic obstructive pulmonary disease (COPD) and their caregivers. It is also open to medical professionals and other interested individuals/organizations. COPD has foreign members as well. Membership is free. COPD is a disease characterized by a progressive airflow limitations caused by an abnormal inflammatory reaction to the chronic inhalation of particles.
3210 N. Leisure World Blvd.
Silver Spring, MD 20906
Phone: (301) 598-6693
Genetic and Rare Diseases (GARD) Information Center
Established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD) at the National Institutes of Health, the Genetic and Rare Diseases Information Center gives health care providers and their patients immediate access to experienced information specialists who can supply current and accurate information about more than 6,000 genetic and rare diseases in English and Spanish. Information specialists answer calls Monday through Friday from 12 p.m. to 6 p.m. EST. Bilingual information specialists can speak with Spanish-speaking callers. All information requests are completely confidential.
PO Box 8126
Gaithersburg, MD 20898-8126
Phone: (301) 251-4925
Toll-free: (888) 205-2311
March of Dimes Birth Defects Foundation
The March of Dimes Birth Defects Foundation (MODBDF) is a national, non-profit organization that was established in 1938. The mission of the foundation is to improve the health of babies by preventing birth defects, premature birth and infant mortality. The March of Dimes funds programs of research, community services, education, and advocacy. Educational programs that seek to prevent birth defects are important to the foundation and, to that end; it also produces a wide variety of printed informational materials and videos. The Pregnancy & Newborn Health Education Center is staffed by trained health information specialists who provide researched information on pregnancy issues, complications and risks, newborn care, birth defects, genetic diseases and related topics as well as referrals to relevant organizations and support groups.
The March of Dimes Birth Defects Foundation has added an email and website for Spanish speaking individuals.
1275 Mamaroneck Avenue
White Plains, NY 10605
Phone: (914) 997-4488