Organizations

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Cystic Fibrosis Foundation (CFF)
Established in 1955 to raise money for research to find a cure for cystic fibrosis and to improve the quality of life for CFers. The CFF:

  1. financially supports 114 CF care centers which are located at teaching and community hospitals throughout America and provide high quality specialized care for persons with CF.
  2. funds its own network of 12 CF Research Centers throughout North America.
  3. provides a variety of grants to scientists to conduct CF research.
  4. supports clinical trials at CF care centers to test new drug therapies.
  5. offers informational publications on a variety of subjects including CF research updates, health insurance, and financial assistance programs.
  6. supports CF research, medical care public policy and education programs with the help of over 250,000 volunteers. These volunteers are part of the CFF’s 70 chapters and branch offices across the country.

In an analysis published by the Non Profit Times in 1994, the CFF spent only 9 % of its revenue on fundraising and administration. This figure was considerably less that most other health related charities, including the Juvenile Diabetes Foundation (15.68 %), Easter Seal Society (16.21 %), American Lung Assoc.(22.71 %), American Cancer Society (24.34 %), and the Muscular Dystrophy Assoc. (25.25 %).

For more information call 1(800) FIGHT CF and they will provide telephone numbers for a chapter office of the CFF near you, if you would like to become a volunteer or get more involved with the CFF in any way. The national office can also provide educational materials on CF for patients and families. You may also call this number to subscribe to the Commitment, the CFF’s national newsletter. Mailing address: 6431 Arlington Road

Bethesda, Maryland, 20814

The Cystic Fibrosis Foundation has a World Wide Web page at
http://www.cff.org

Canadian Cystic Fibrosis Foundation (CCFF)
A non-profit; incorporated 1960, the Foundation aims to find a cure or an effective control for CF. To that end, the CCFF sponsors extensive research and treatment programmes which are conducted in clinics and laboratories throughout Canada. The main objective of the Foundation is to aid those affected by CF by, conducting research into improved care and treatment, and pursuing a cure or control for cystic fibrosis; promoting public awareness of CF; and raising funds for these purposes through a variety of national initiatives, corporate appeals, and the generous assistance of CCFF volunteer Chapter members and supporters.

The CCFF is the world’s second largest, non-governmental granting agency in the field of CF research. The Foundation raises over $9 million annually with the assistance of its Chapter volunteers, as well as with the support of the Kinsmen & Kinette Clubs of Canada, Zellers stores, college and university Shinerama students, members of the Life Underwriters Association of Canada (LUAC), and many individuals, groups, corporations, and private foundations.

The Canadian Cystic Fibrosis Foundation publishes two newsletters (contact info below):

  1. Candid Facts/A propos, free, published quarterly in English and French, features medical/scientific news and information of interest to the CF community; CF fundraising highlights and special events and human interest features (e.g. individuals living with CF, CF volunteers and their special contributions);
  2. Circle of Friends, published three times a year, features news and information of particular interest to adults with cystic fibrosis; donation of $15 per year requested.

The Canadian Cystic Fibrosis Foundation has a World Wide Web page at http://www.ccff.ca/~cfwww/index.html

Canadian Cystic Fibrosis Foundation 2221 Yonge Street, Suite 601 Toronto, Ontario M4S 2B4 Telephone: (416) 485-9149

Fax: (416) 485-9149

Cystic Fibrosis Research Trust
Publishes “CF News” quarterly “to provide readers a reliable source of medical, research and other information about CF and to play a supportive role for CF families”. UK orientated with over half the editorials devoted to regional and fund raising news but there are also information articles. Subscriptions free; snail-mail: 11 London RoadBromley BR1 1BY, ENGLANDTelephone: 0181 464 7211 Fax: 0181 313 0472

URL: Http://www.cftrust.org.uk

Australian Cystic Fibrosis Associations Federation (ACFAF)
There are seven state associations in addition to the ACFAF – those State Assoc big enough to do so are responsible for providing services and assistance to local PWCF. ACFAF funds research, coordinates national public awareness campaigns and lobbies federal govt. on all matters related to CF (ACFAF is not a service provider); ACFAFPO Box 254North Ryde, New South Wales, 2113, AustraliaPhone within Australia 02 8785250

Fax within Australia 02 8785058.

Association Francaise de Lutte Contre la Mucoviscidosis (France’s CF Association)

Federacion Espanola Contra la Fibrosis Quistica
Spanish CF organization; publishes a newsletter. Mail: C/ Lladro y Malli10, 46007 Valencia, Spain

Telephone: (96) 380.08.75

Belgische Vereniging voor Strijd tegen Mucoviscidose (BVSM) v.z.w.
 Belgian Association for CF; employs full-time and part-time specialists (social workers, dietists, etc). It publishes a magazine I thought on a monthly basis (not sure); organization consists further of provincial groups which organize events: so there is a group for Antwerp, a group for Sint-Niklaas (another Belgian city) etc.

Madame Annick MarechalAssoc Belge de Lutte Contre la MucoviscidoseAvenue J. Bor=E9 12B-1160 Bruxelles

Tel: +32 2 675 57 69

In Dutch it is: Mevr. Annick MarechalBelgische Vereniging voor Strijd tegen Mucoviscidose (BVSM) v.z.w. J. Bor=E9laan 12B-1160 Brussel

Tel: +32 2 675 57 69

International Association of Cystic Fibrosis Adults (IACFA)
Open to all CF afflicted people worldwide who are 18 years or older; sponsors IACFA Newsletter and international conferences every 2 years; founded 1982; non-profit; more info: email [email protected] or mail to Barbara Palys, Chairperson82 Ayer Road

Harvard, MA, 01451, USA

Cystic Fibrosis Research, Inc. (CFRI)
A non-profit; Membership: US$12 ($50 lifetime); publishes CFRI News; raises money for research; annual educational conference on CF for adults with CF and parents of children with CF; sponsors parent and patient support groups and semi-annual membership meetings; videotapes of general meetings and conference presentations available; telephone and email referrals; annual retreat for teens (ages 16 and older) and adults with CF; more info: Tele: (650) 404-9975

Email: [email protected]

Website: www.cfri.orgBayside Business Plaza2672 Bayshore Parkway, Suite 520

Mountain View, CA 94043, USA

CF Network, Inc.
Publishes NETWORK newsletter; non-profit; more info: email your address to [email protected], or mail to CF Network, Inc.P.O. Box 1179

Broomfield, CO 80038-1179, USA

Cystic Fibrosis Alliance, Inc. (CFA)
Seeks to enhance the quality of living for people with cystic fibrosis, and to assure that people with CF are not discriminated against; an all volunteer organization, comprised of people with CF, their family, friends and other health care providers; conceived out of frustration over repeated denials of health care insurers to meet the needs of people with CF. Provides: resources and referrals to those with CF; liaison between people with CF and their case managers, medical directors and elected officials; support and personal experiences about how to communicate with your health care providers regarding your specific medical needs. Cystic Fibrosis Alliance, Inc.P.O. Box 25695Tamarac, FL 33320

eMail address: [email protected]

Phone number: (954)748-2123.

Central Florida CF Support GroupAffiliated with the CF Pharmacy, Inc.; publishes the newsletter The Informer; mail: 633 East Colonial DriveOrlando, Florida, 32803

Telephone : 1-800-741-4427.

(5/97)- Heroes Foundation
A charity organization for CF that has golf tournaments and the like founded by Boomer Esiason (a football star).
Email: [email protected] Telephone: 1-800-789-4376

There is a web site at http://www.heroes.org

(5/97)- CyFi International Inc.
Founded in 1989, as CyFi Youth Inc. and restablished in 1997 as CyFi International Inc.; Cy for Cystic and Fi for Fibrosis, CyFi was created to promote fun and health education for older kids, and young adults. CyFi currently is staffed by a Board of Directors consisting of 8 teens with Cystic Fibrosis across the U.S. They provide all types of information to the general community to promote CF awareness, from public speaking to support groups and retreats. As the needs of the patients change so do the things they provide. They service a quarterly newsletter (“CyFi Express”) for teens and young adults. Mail:

11000 6th St. E. Treasure Island, Fl 33706

E-Mail: [email protected] (NOTE: Please put “Direct Mail” in the subject of any E-mail).

Telephone: (813) 360-CyFi.

Tanya DeGeorge-Florio, Director / founder.

Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S.) Program
A free service provided by Quantum Health Resources; they will help answer questions and assist you in filing for social services such as SSI, social security disability, Medicaid, Medicare, COBRA. They know the application process well and have a 99% success rate in facilitating application approvals. Call 1-800-999-5433 ask for Rick, Peter, or Brian.

European Working Group for CF (EWGCF)
A long established (over 30 years) working group of European physicians and scientists in the field of cystic fibrosis. Every year, the EWGCF sponsors a medical conference devoted to CF in mainland Europe. The current Chairman of the EWGCF is Niels Hoiby of Copenhagen, Denmark.

International Cystic Fibrosis (Mucoviscidosis) Association (ICFMA, or ICF(M)A )
Founded about 20 years ago (in the USA) and is the umbrella group which links all the national associations devoted to CF worldwide. They also sponsor small seminars in physiotherapy, and have a medical fund for grants. Every four years, the ICF(M)A hosts a World CF Congress (which in 1996 will be held in Jerusalem, Israel). Every year, the ICF(M)A holds its annual business meeting, usually, but not always, in conjunction with the EWGCF CF Conference. The ICF(M)A is associated with IACFA and the IPG/CF – International Association of CF Adults and International Physiotherapy Group for CF. The president of the ICF(M)A is Martin Weibel of Switzerland. The current focus of the ICF(M)A is developing recognition and awareness of CF in under-developed countries (i.e. Latin American, India, etc.) worldwide.

United Network for Organ Sharing (UNOS)
Oversees donor organs distribution; can provide list of transplant centers which includes: type of organ transplant and the number done by each center for each organ by year for the last 5 years enabling identification of centers very active in lung transplants; phone: 1-800-474-8667. They can also be reached via email … current addresses can easily be gotten by monitoring the alt.transplant.listserv Usenet group, or by subscribing to the transplant listserv. They have a web site at: http://www.unos.org

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