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Foundations and Other Organizations
Specifically about CF
United States Adult Cystic Fibrosis Association
A source of information for CF adults regarding the basis, nature and progression of
the disease, as well as the latest treatments and research to fight it
and to provide a forum for CF adults to communicate to each other.
http://www.cfroundtable.com
The Milan Foundation
The primary goals of the foundation are to educate, raise awareness and provide assistance to families in need.
http://www.milanfoundation.org/
The Reach for the Stars Foundation
Dedicated to providing individuals afflicted with Cystic Fibrosis and their families with the
resources, knowledge and support necessary to manage their unrelenting battle with this insidious disease.
http://www.r4stars.org/
Heroes of Hope Living with CF
To recognize and salute unique individuals with cystic fibrosis who are stars in their own right for
striving to live full and productive lives, and for being role models of hope to others, while continuing
to manage their healthcare needs.
http://www.pulmozyme.com/hoh/hoh_mission.jsp
Second Wind Transplant Association of St. Louis
A patient and family information web site
http://www.secondwindstl.org
My Cystic Fibrosis dot com
Mycysticfibrosis.com is a free resource for people living with cystic
fibrosis (CF). This site contains personal management tools to help
track important health measures on a daily basis.
http://www.mycysticfibrosis.com
Medrise's page
A very good site for all kinds of CF stuff.
http://www.cysticfibrosis.com
National Cystic Fibrosis Awareness Committee
Site that promotes CF awareness.
http://www.cfawareness.org/
International Association of Cystic Fibrosis Adults
Good newsletters, info on CF Adult issues.
http://www.iacfa.org
The Boomer Esiason Foundation
Basic CF info, fundraising events, etc.
http://www.esiason.org
Cystic Fibrosis Foundation
Good resources, on-line store, on-line pharmacy info.
http://www.cff.org
The Cystic Fibrosis Center at Stanford
News, info and links. Good site...
http://cfcenter.stanford.edu
Cystic Fibrosis Mutation Database
The information contained in this
database is compiled with
information collected by the
Cystic Fibrosis Genetic Analysis
Consortium.
http://www.genet.sickkids.on.ca/cftr/
Aetna InteliHealth's Cystic Fibrosis Genetic Testing Guide
Cystic Fibrosis Genetic Testing Guide.
http://www.intelihealth.com/IH/ihtIH/WSIHW000/24479/35140.html
Health Organizations Not CF-Specific
Brave Kids site
A site for kids and their families that are dealing with chronic illnesses.
http://www.bravekids.org/
HealthlinkUSA
Kitchen sink of illness-related links. Interesting mix of links for CF.
http://www.healthlinkusa.com
HealingWell
A community and information resource web site for patients,
caregivers, and family coping with diseases, disorders and chronic illness.
The goal is simple .... to help people on their way to "healing well".
Offers health resources and interactive tools that enable patient's to take
control of their illness and start the healing process.
http://www.healingwell.com
Individuals and Groups
Ask James About CF
http://www.ajcf.com
Dreamsurfer Network
A password protected, Internet support and education network, which
provides teens with life-threatening illnesses a community
of
friendship and understanding. The site is open to all teens with
life-threatening illnesses that are referred by a hospital or clinic and
who complete the necessary
application.
http://www.dreamsurfer.org
65 Roses
The mission of SixtyFiveRoses.com is
to raise awareness and understanding of cystic fibrosis, to provide a
support center, and to help build unity and momentum in the fight to cure
this debilitating disease.
http://www.65roses.com
Melinda Sue Kerns' site
Melinda Sue Kerns' site in tribute to her son Chuck who had CF.
http://melindasue2.tripod.com/chuck.htm
CF message board
Great board for discussing anything, CF-related or not. Not a 'chat' board but a message board.
http://www.tdl.com/~barky/cfboard/wwwboard.html
Risa Gans' site
Info about transplants, Transplant Sharing Exchange.
http://members.boardhost.com/Transbuddies/
Sandy Cochran's CF information site
http://www.geocities.com/HotSprings/Villa/9559
Jeff Wine's page of CF links
Last updated 5/98
http://www-psych.stanford.edu/~wine/CF-Links.html
CYSTIC-L internet mailing list home page
Cystic-L is an email-based discussion group. This is their home page.
Good photo section! A perusal through this area will show you the faces of CF. Highly worth while...
http://Cystic-L.org
Norma Kennedy's page of CF Links
Good resources and photos. Check out the photos of Brian Rydall's lung transplant scars. Wow!
http://www3.nbnet.nb.ca/normap/CF.htm
Cystic Fibrosis Pharmacy
Pharmacy in Florida, USA, that specializes in products and medicines for
people with CF and their families. Serves all of the US and overseas. Runs a
central Florida CF support group.
http://www.cfpharmacy.com
Hardin Meta Directory (Hardin MD)
The Hardin Meta Directory (Hardin MD) has been a popular health portal site
whose purpose is to provide access to the best lists of Internet
sources in health and medicine.
http://www.lib.uiowa.edu/hardin/md/cysticfibrosis.html
Sites by people with CF
Michelle Compton's website
Poetry (by people with CF) and other beautiful things.
http://www.dragonflypond.com
The Breathing Room
Facilitates candid and open communication between adults with Cystic
Fibrosis, supports the development of a community of adults with CF and
provides education and insight for families, caregivers, and medical
professionals who impact our lives.
http://www.thebreathingroom.org
International
Cystic Fibrosis Prescriber (UK)
A nicely designed web site for the management of cystic
fibrosis for medical professionals, patients and their families.
http://www.cysticfibrosismedicine.com
Cystic Fibrosis Resource Centre (UK)
A detailed information resource for cystic
fibrosis patients, parents, doctors and others with an interest in CF.
http://www.cysticfibrosis.co.uk
Jose Pulido (en español)
How do you say 'cystic fibrosis' in spanish? Find out here!
http://www.geocities.com/HotSprings/2677/
The European Cystic Fibrosis Society
Euro-specific CF stuff. Go here before you go there...
http://www.uwcm.ac.uk/uwcm/eqgcf
Canadian Cystic Fibrosis Foundation
Good site. Lots of on-line info. Canadian CF clinic site addresses, research info, email discussion.
http://www.ccff.ca
Cystic Fibrosis Victoria (Australia)
Cool. Lots of services, help for people in Victoria. Popular chat room. Good organization to emulate.
http://www.cfv.org.au
Newsletters
Newsletter list www.cysticfibrosis.com has a GREAT
list of newsletters at this address:
www.cysticfibrosis.com/newsletters.htm
NETWORK A national (USA), quarterly newsletter for adults with CF.
You may subscribe by contacting NETWORK at the address below. If you or your child(ren) have CF, please provide date of birth. Thank you.
CF Network, Inc, P.O. Box 3459 Littleton, CO 80161-3459
Informer Produced by the CF Pharmacy in
Florida (see above link). 16 pages, bi-monthly. Nicely home-spun.
Informational but also informal. Pictures, mail-buddies, birthdays, etc. Bev Donelson at bevd@hhcs.com.
CF Roundtable A newsletter put out by USACFA (US Adult CF Association). To subscribe
email CFRoundtable@cysticfibrosis.com or call (503) 669-3561.
If you find any links that no longer work or have changed,
or you have an informational CF site you would like to add, please do not hesitate to
notify the CFRI web site maintainer at webmaster@cfri.org
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