Self Help Clearinghouse

Respiratory Disease / Emphysema

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

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: 10/1/2008

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 (emphysema, chronic bronchitis, asthma, pulmonary problems, etc.) if available. These groups use names such as 'Easy Breathers' or 'Family Asthma Support Group.'
Write:
American Lung Association
61 Broadway, 6th Floor
New York, NY 10006
Voice: 1-800-586-4872 or 212-315-8700
Website: http://www.lungusa.org
Verified: 9/30/2008

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
1233 20th St., NW, Suite 402
Washington, DC 20036
Voice: 1-800-727-8462 or 202-466-7643
Fax: 202-466-8940
Website: http://www.aafa.org
E-mail: info@aafa.org
Verified: 10/13/2008

EFFORTS

Online. Support for persons afflicted with emphysema. Offers information on local support groups. Forum for sharing ideas and help in dealing with emphysema. Advocacy for research. Listserv.
Write:
EFFORTS
239 NE Hwy 69, Suite D
Claycomo, MO 64119
Fax: 816-413-0176
Website: http://www.emphysema.net/bindex.html
Verified: 10/17/2008

COPD-Support, Inc.

Online. Provides a variety of online self-help 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
E-mail: management@copd-support1.com
Verified: 10/16/2008

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
1659 Branham Lane, Suite F, #227
San Jose, CA 95118
Voice: 1-888-222-8541
Website: http://www.coalitionforpf.org
E-mail: info@coalitionforpf.org
Verified: 10/1/2008

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: 9/28/2008

Bronchiectasis Support and Information

Online. 192 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/Bronchiectasis_support/
Verified: 9/23/2008

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The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.

For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp

If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org

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