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Respiratory Disease / Emphysema

Self Help Clearinghouse

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: 3/12/2014

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 9023295118
Voice: 1-888-222-8541
Website: http://www.coalitionforpf.org
E-Mail: info@coalitionforpf.org
Verified: 2/27/2014

COPD Survivors

Online. Provides support for patients diagnosed with COPD which includes emphysema and/or chronic bronchitis.
Website: http://health.groups.yahoo.com/group/copdsurvivors and https://groups.yahoo.com/neo/groups/copdsurvivors2/info
E-Mail: copdsurvivors-owner@yahoogroups.com and copdsurvivors2@yahoogroups.com
Verified: 3/6/2014

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
Voice: 1-866-END-COPD
Website: http://www.emphysema.net/bindex.html
Verified: 3/5/2014

Pulmonary Fibrosis Foundation

National. Provides support for individuals with pulmonary fibrosis. Dedicated to assisting the pulmonary fibrosis (PF) support group community as well as aiding in the establishment of new PF in-person and online support groups globally. To find a wide selection of support groups click on 'SUPPORT GROUPS'.
Write:
PFF
230 East Ohio St., Ste 304
Chicago, IL 60611-3201
Voice: 1-888-733-6741
Fax: 1-866-587-9158
Website: http://www.pulmonaryfibrosis.org
E-Mail: info@pulmonaryfibrosis.org
Verified: 2/19/2014

COPD Support, Inc.

Online. Support and sharing of ideas and experiences for persons with COPD (Chronic Obstructive Pulmonary Disorder) and their caregivers. Mailing list, chatroom, forum and Facebook page. Groups include: patients, caregivers, stop smoking, exercise, 'Watch' program for those who live alone, and 'Smiles of Sunshine' to cheer those who are not well.
Website: http://www.copd-support.com
E-Mail: management@copd-support.com
Verified: 11/6/2013

Asthma and Allergy Foundation of America

National. 100 affiliated groups. 5 chapters. Founded 1953. Provides support and information for persons with asthma and/or allergies through support groups, information and referrals and advocacy. Supports research, educates public about allergies and asthma. Lists groups nationwides. Assists in starting new groups.
Write:
AAFA
8201 Corporate Dr., #1000
Landover, MD 20785
Voice: 1-800-7-ASTHMA
Website: http://www.aafa.org
E-Mail: info@aafa.org
Verified: 2/10/2014

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