Respiratory Disease / Emphysema
Self Help Clearinghouse
White Lung Association
National. Founded 1979. Educational support and advocacy for the
general public, provided in part by asbestos victims and their
families. Provides public education on health hazards of asbestos
and the education of workers on safe work practices. Part of the
global effort to ban asbestos. Assistance provided in starting new
groups. Dues $25/yr.
Write:
White Lung Association
P.O. Box 1483
Baltimore, MD 21203
Voice: 410-243-5864
Website: http://www.whitelung.org
E-mail: jfite@whitelung.org
Verified: 10/24/2007
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: 9/24/2007
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: 10/16/2007
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: 12/20/2007
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.
Website: http://www.emphysema.net/bindex.html
Verified: 9/25/2007
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-support1.com
Verified: 5/8/2008
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: 5/7/2008
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: 12/17/2007
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: 9/25/2007
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