Respiratory Disease / Emphysema

Self Help Clearinghouse

Alpha-1 Association

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.
Write:
Alpha 1 Association
2937 SW 27th Ave., Suite 106
Miami, FL 33133
Voice: 1-800-521-3025 or 305-648-0088
Fax: 305-648-0089
Website: http://www.alpha1.org
E-mail: info@alpha1.org
Verified: 01/26/2011

American Lung Association

(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.'
Write:
American Lung Association
1301 Pennsylvania Ave. NW, Suite 800
Washington, DC 20004
Voice: 1-800-548-8252
Website: http://www.lungusa.org
Verified: 01/26/2011

Asthma and Allergy Foundation of America

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.
Write:
Asthma and Allergy Foundation
8201 Corporate Dr., Suite 1000
Landover, MD 20785
Voice: 1-800-727-8462 (Mon.-Fri., 10am-3pm EST)
Website: http://www.aafa.org
E-mail: info@aafa.org
Verified: 01/27/2011

EFFORTS

Online. Support for persons afflicted with emphysema. Offers information on local support groups. Forum for sharing ideas and help in dealing with emphysema. Listserv. Advocacy for research.
Website: http://www.emphysema.net/bindex.html
Verified: 03/29/2011

COPD-Support, Inc.

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.
Website: http://copd-support.com
Verified: 03/29/2011

Coalition for Pulmonary Fibrosis

National. 40 affiliated groups. 12,000 members. Founded 2001. Information, resources, educational materials and support for patients with pulmonary fibrosis.
Write:
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd, Suite 343
Culver City, CA 9023295118
Voice: 1-888-222-8541
Website: http://www.coalitionforpf.org
E-mail: info@coalitionforpf.org
Verified: 01/27/2011

Huff-n-Puff

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.
Website: http://www.huff-n-puff.net
Verified: 01/26/2011

Bronchiectasis Support and Information

Online. 250+ members. Founded 2005. Provides information and support to fellow sufferers and caregivers. Bronchiectasis is a condition where some bronchi and smaller bronchioles in lungs are permanently dilated. Message board.
Website: http://health.groups.yahoo.com/group/brochiectasis_support
Verified: 03/29/2011

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