Respiratory Disease / Emphysema
International. 54 affiliated groups. Founded 1988. Support, advocacy and information for persons with alpha-1 antitrypsin deficiency and their families. Networking of members through newsletter and support groups across the country. Sharing of current information on treatments and research. Newsletter, group development guidelines, educational materials and advocacy information.
Alpha 1 Association
2937 SW 27th Ave., Suite 106
Miami, FL 33133
Voice: 1-800-521-3025 or 305-648-0088
(BILINGUAL) National. Founded 1904. Refers callers to regional resources for information on lung health, smoking and environment. Local chapters can provide referrals to support groups for persons with chronic lung disorders such as emphysema, chronic bronchitis, asthma, pulmonary problems, etc. These groups use names such as 'Easy Breathers' or 'Family Asthma Support Group.'
American Lung Association
1301 Pennsylvania Ave. NW
Washington, DC 20004
National. 100+ affiliated groups and 9 chapters. Founded 1953. Serves persons with asthma and allergic diseases through advocacy, the support of research, patient and public education. Newsletter and support/education groups. Assistance in starting and maintaining groups. Books, videos and other educational resources.
Asthma and Allergy Foundation
8201 Corporate Dr., Ste 1000
Landover, MD 20785
Voice: 1-800-727-8462 (Mon.-Fri., 10am-3pm EST)
Online. Provides a variety of online support programs for chronic obstructive pulmonary disease patients, caregivers and interested medical personnel. Programs include: moderated mailing lists, forums, chats, a weekly newsletter 'COPD-Watch' for those living alone, 'Smoke No More' for help in quitting smoking and 'Let's Get Fit' exercise program.
National. 55 affiliated groups. 25,000 members. Founded 2001. Information, resources, educational materials and support for patients with pulmonary fibrosis.
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd, Ste 343
Culver City, CA 90232-95118
Online. 1000+ members. Provides support for people with any type of interstitial lung disease (including pulmonary fibrosis). Opportunity to meet others with similar conditions, experiences and knowledge.
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