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You are here: Home > Diseases and Conditions > Genetic Disorders > Cystic Fibrosis
 

Organizations


 
Cystic Fibrosis Treatment Information
Find information about Cystic Fibrosis, its symptoms, treatment, and about Pulmozyme (dornase alfa) Inhalation Solution.
http://www.pulmozyme.com/
A Wish for Wendy
Softball tournament benefiting Cystic Fibrosis research in honor of Wendy Carol Lipman who died 15 days after birth from cystic fibrosis.
http://wishforwendy.org
About TOBI and the Management of Cystic Fibrosis
Information on Tobramycin Solution for Inhalation (TOBI) for pseudomonas infection, by pharmaceutical agency.
http://www.abouttobi.com
Ambry Genetics
Testing for CF mutations. Offers a comprehensive screening of CF mutations, plus Poly T Variant analysis, and direct DNA sequencing of exon.
http://www.ambrygen.com/
Billycook.com
Billy Cook battled cystic fibrosis and died. The site generates funding for patients of this deadly disease.
http://www.billycook.com
Cindy's Friends
Information about the disease, progress being made towards a cure, and fundraising efforts in Tennessee.
http://www.cindys-friends.com
Cute Petite Chic - A Cystic Fibrosis Web
Basic information with good description of sweat test, memorial page for a girl lost to CF at age 9, details of her last days and link to give in her memory through Great Strides.
http://www.cuteptchic.com
Cystic Fibrosis Medicine
Provides free information to professionals involved with the treatment of cystic fibrosis. An open access section is also available to both patients and family
http://www.cysticfibrosismedicine.com
Cystic Fibrosis Research Inc.
News about CF research. Site also has a newsletter available.
http://www.cfri.org/
Cystic Fibrosis Resource Centre
A source of information for cystic fibrosis patients, parents, doctors and other carers.
http://www.cysticfibrosis.co.uk
Cystic Fibrosis Services
A subsidiary of the Cystic Fibrosis Foundation and a national pharmacy that specializes in providing medications to individuals with cystic fibrosis (CF).
http://www.cfservicespharmacy.com/
Cystic Fibrosis Symptom
Cystic Fibrosis Information and Resources.
http://www.cystic-fibrosis-symptom.com/
Cystic Fibrosis Western Australia
Includes a calendar of events, information for people with CF who travel to Australia from other countries (what their healthcare entitlements are), pointers for teachers of children with CF, and a list of services and support.
http://www.cysticfibrosiswa.org
Cystic-L
Cystic fibrosis information and support, including a vibrant on-line community, via email, a Handbook of information and resources, photos of CFers, a CF Shop and bookstore.
http://Cystic-l.org
CysticFibrosis.com
Internet community for cystic fibrosis patients, families and loved ones.
http://www.cysticfibrosis.com/
Kate McCloughan Krzyzak
Obituary site.
http://www.princesskatherine.net/
Michigan Pulmonary Disease Community, Inc.
Organization dedicated to enhancing lives of children and adults with Cystic Fibrosis.
http://www.mpdci.org
MyCysticFibrosis.com
Personal management tools to help track important health measures, together with in-depth articles and personal support from site specialists. Members can share data with caregivers and their healthcare team.
http://www.mycysticfibrosis.com
North American Cystic Fibrosis Conference in New Orleans
Information on program and location.
http://www.nacfconference.org
Providence Cystic Fibrosis Center
Ran by Dr. Bohdan Pichurko. Includes staff biographies, contact information, events, and latest developments in treatment.
http://www.cfcenter.net/
Sharktank.org
Dedicated research for a cure for cystic fibrosis.
http://www.sharktank.org
The Breathing Room
Guidance about the art of living with cystic fibrosis.
http://www.thebreathingroom.org
The Cystic Fibrosis Center Ltd, Dead Sea, Israel
Seasonal health camp on the Dead Sea. Information on staff, programs, photo gallery and newsletter.
http://www.cfcenter.co.il/
The Spirit of Lo - Inspirational Book
Book about Cystic Fibrosis and the effects on the family. Tells the story of an ordinary family and their struggle with having a chronically ill child.
http://www.spiritoflo.com
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