Cystic Fibrosis Related Links

CF RESOURCES
http://www.cff.org Cystic Fibrosis Foundation (National)
https://www.cfservicespharmacy.com/Home/ CF Services, Inc. Pharmacy for all CF medication needs.
http://www.cfri.org Cystic Fibrosis Research, Inc.
http://www.cysticfibrosis.com Support for people with CF, their families and care-givers.
http://www.newdaywell.org New Day Wellness (NDW) is a non-profit organization run by a
retired physician with CF who provides health and wellness coaching to others with CF.
http://webring.ajcf.com/ currently 50 active websites in this ring. Each site has some content in their web site that relates to living with cystic fibrosis or offers information about CF.
http://www.thebreathingroom.org 'Through the Looking Glass' and 'Caregiver's Stories' are projects of the Breathing Room. It 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.
http://cystic-l.org/html/join_cystic-l.htm The Cystic-L mailing list, the mother of all CF mailing lists, began in 1994 and is going strong! With an international subscribership, Cystic-L welcomes EVERYONE to share information and support related to cystic fibrosis. Also of interest: http://cystic-l.org/html/cf_shop.htm, http://cystic-l.org/html/CFS-Bookstore.htm,
http://cForward.net an online resource for cystic fibrosis (CF) patients and their caregivers. The new site, found at www.cForward.net, offers interactive educational content, community-based programming and access to important information specific to CF patients and their needs.
http://cystic-l.org/html/cystic-l_research_news.htm
http://www.esiason.org Boomer Esiason Foundation. Raises money for research, promotes public awareness, updates news on research, etc.
http://www.hhcs.com HHCS Health Group, Florida CF Pharmacy for all CF medication needs.
https://www.cfliving.com CF Living is a free, online program that provides educational materials and support to people with CF and their caregivers and encourages patients to stay compliant to their medications and live a healthy lifestyle.
www.heroesofhope.com Heroes of Hope recognizes unique individuals with CF who strive to live full and productive lives, serving as role models of hope to others, while continuing to manage their own healthcare needs.
http://www.idealist.org/cysticfibrosis Action without Borders.
http://www.cfww.org Cystic Fibrosis World Wide (Formerly International Association of Cystic Fibrosis Adults (IACFA)
http://www.reachingoutfoundation.org Reaching Out Foundation. Enhancing life for patients and families with cystic fibrosis.
http://www3.nbnet.nb.ca/normap/CF.htm Norma Kennedy Plourde's CF web site: Established in 1997, has received over half a million hits, has over 2,000 various CF-related links, and has a lot of very useful information aimed at people with CF, their parents, students studying CF and medical personnel. Has been viewed worldwide, and has helped many people dealing with a new diagnosis, and also people wanting information pertaining to certain aspects of CF.
http://www.AIR-CF.com is the online information resource for the AIR-CF (Aztreonam Lysinate for Inhalation research in Cystic Fibrosis) clinical trials. The AIR-CF clinical trials are investigating the use of an inhaled formulation of the antibiotic aztreonam for people with cystic fibrosis (CF) who have Pseudomonas aeruginosa in their lungs. The website provides valuable information for people considering participation in the clinical trial.
http://www.liv.ac.uk/cfgd The Cochrane Cystic Fibrosis & Genetic Disorders Review Group is made up of an international network of health care professionals, researchers and consumers preparing, maintaining, and disseminating systematic reviews of randomised control trials in the treatment of cystic fibrosis and other genetic disorders.
http://health.groups.yahoo.com/group/cysticfibrosispenpalclub/yguid=230275933 The Cystic Fibrosis Pen Pal Club and Support Group endeavors to connect people with CF to provide emotional support as well as to provide information about CF. The CF Pen Pal Club and Support Group is currently in the process of obtaining nonprofit foundation (501(c)3) status
http://www.cafepress.com/cfpenpalclub This site contains an extensive range of merchandise from infant through adult clothing to postcards, wall clocks, mugs, totes, magnets, etc. Most carry the saying "CF SUCKS the air out of your lungs" or "Cystic Fibrosis Pen Pal Club and Support Group".

DIABETES AND NUTRITION
http://www.diabetes.org/default.html American Diabetes Association (ADA)
http://www.joslin.harvard.edu Joslin Diabetes Center. Research, treatment, patient and professional education.
http://www.jdfcure.org Juvenile Diabetes (International) Foundation

FINANCIALRESOURCES
http://gene.com Genentech, Inc., manufacturers Of Pulmozyme, has an Endowment Program for CE
http://www.otf.org Organ Transplant Fund, Inc. “Reaching out to help” those who seek a new life through transplantation, by providing health care services, financial assistance and advocacy programs to transplant candidates, recipients and their families nationwide.
http://www.phrma.org/patients Pharmaceutical Research and Manufactures of America. publishes “The 1998 Directory of Prescription Drug Patient Assistance Programs”.
http://www.scandipharm.com Scandipharm “Comprehensive Care Program for CF’.

HUMOR
http://www.AATH.org American Association for Therapeutic Humor.
http://www.kingfeatures.com Comics from newspapers.
http://www.snoopy.com Official Peanuts website and comics by other cartoonists.

KNOW YOUR RIGHTS
http://www.dredf.org Disabilities Rights Education and Defense Fund (DREDF)
http://www.eeoc.gov United States Equal Ernployment Opportunity Conimission (EEOC)

ORGAN DONATION & TRANSPLANTATION ORGANIZATIONS
http://www.2ndwind.org Second Wind Lung Transplant Association, Inc. Dedicated to support and education of lung transplant candidates, recipients, friends, family, and the public regarding the need for organ donation and benefits of transplantation.
http://www.transweb.org TransWeb. All about Transplantation and Donation.
http://www.unos.org United Network for Organ Sharing. A non-profit corporation. Its mission is to improve the effectiveness of human organ donation, procurement, distribution and transplantation.

PULMONARY AND GENERAL MEDICINE RESOURCES
http://www.aarc.org American Association for Respiratory Care.
http://www.aarc.org/index.html American Association for Respiratory Care. http://www.lungusa.org The American Lung Association National Office.
http://www.meddean.luc.edu./develop/PuImfunc/images/main.htm“A Beginner’s Guide to Pulmonary Function Tests”.
http://www.njc.org National Jewish Center for Immunology & Respiratory Medicine.
http://www.phrma.org This is the official website of the Pharmaceutical Research and manufacturers of America.
http://www.medicare.gov This website provides information about healthcare options under Medicare or complementary to medicare under its "Prescription Drug Assistance Program" section.
http://www.rxhope.com This website offers resources for consumers, advocates and health care providers in accessing patient assistanceprograms offered by federal, state, county and charitable organizations.
http://www.needymeds.com This website provides information on drug assistance programs offered by pharmaceutical companies.
http://www.rxassist.org This website allows health care professionals (for physician/clinic only) to access more than 100 pharmaceutical manufacturer's patient assistant programs on behalf of their patients.
http://www.yoysearch.com/ YoYsearch.com - a convenient interface to ten types of search.

SUPPORT
http://www.cfcare.com Ortho-McNeil Pharmaceuticals. Provides news, tips, and general information about CF in several areas.
http://www.pathogenesis.com PathoGenesis Corp. Information on TOBI.
http://www.wellspouse.org The Well Spouse Foundation Provides support and information to the well spouses of the chronically ill, and educates human services professionals and the public about the needs of spousal caregivers and their families.

TRAVEL RESOURCES
http://www.access-able.com Database maintained by Access-Able Travel Source. Provides free information to travelers with disabilities. Information about accommodations, transportation, public & private, and travel resources (tours and access guides) for many locations world- wide.
http://www.doctordirectory.com Database of approximately 500,000 doctors in U.S.A. Can be searched by name, specialty, address or telephone number.
http://www.hospitaldirectory.com A database of over 10,000 hospitals can be searched by state, city or zip code.
http://www.oxygen4travel.com Breathin’ Easy: offers freedom A Guide for Travelers with Pulmonary Disabilities, includes 3,000 listings for oxygen refill sites in over 1,700 cities in all 50 states.

VESTIBULAR DISORDERS SOURCES (INNER EAR AND BALANCE PROBLEMS
http://www.vestibular.org Vestibular Disorders Association “VEDA”.
http://www.wobblers.com Wobblers Anonytnous. An international support network of people who have lost vestibular function due to ototoxic substances, especially gentamycin.