Respiratory Disease / Emphysema
Self Help Clearinghouse
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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: 3/29/2012
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.lung.org
Verified: 3/29/2012
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., Ste 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: 3/29/2012
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: 9/20/2011
Coalition for Pulmonary Fibrosis
National. 55 affiliated groups. 25,000 members. Founded 2001. Information, resources, educational materials and support for patients with pulmonary fibrosis.
Write:
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd, Ste 343
Culver City, CA 90232
Voice: 1-888-222-8541
Website: http://www.coalitionforpf.org
E-mail: info@coalitionforpf.org
Verified: 9/2/2011
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: 9/20/2011
Bronchiectasis R Us Forums
Online. Provides suport for support for those diagnosed with bronchiectasis, a destructive and widening of the large airways.
Website: http://www.bronchiectasis.info
Verified: 11/8/2011
The COPD International
Online. Provides support to persons diagnosed with COPD (Chronic Obstructive Pulmonary Disease) as well as their caregivers, via message boards, chatrooms and e-mail discussion groups (to include a quit smoking group). Gives information on local community support groups via email: http://www.copd-international.com/locator/localsupportforum.htm - and can send guides on how to start and run a local community COPD group via email http://www.copd-international.com/supportgroup
Website: http://www.copd-international.com
Verified: 11/8/2011
COPD Support
Online. Provides support for patients diagnosed with COPD via a discussion board.
Website: http://copdforum.portalone.us
Verified: 11/8/2011
COPD Survivors
Provides support for patients diagnosed with COPD which includes emphysema and/or chronic bronchitis also with an asthma component.
Website: http://health.groups.yahoo.com/grop/copdsurvivors
E-mail: copdsurvivors-owner@yahoogroups.com
Verified: 11/8/2011
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.
Write:
EFFORTS
PO Box 20241
Kansas City, MO 64195-0241
Website: http://www.emphysema.net/bindex.html
Verified: 11/8/2011
LUNGevity
Online. Offers online network of support for people affected by lung cancer via blogs, support and advocacy.
Website: http://events.lungevity.org
Verified: 11/8/2011
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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