CF RESOURCES
Cystic Fibrosis Foundation (National)
CF Services, Inc. Pharmacy for all CF medication needs.
Cystic Fibrosis Research, Inc. Connecting CF Resources with Community Needs
cysticfibrosis.com Support for people with CF, their families and care-givers.
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.
The Breathing Room ‘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.
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: CFS-Bookstore, cystic-l.org
Boomer Esiason Foundation. Raises money for research, promotes public awareness, updates news on research, etc.
HHCS Health Group, Florida CF Pharmacy for all CF medication needs.
www.cfliving.com CF Living is a free, online program that provides educational materials and support to people with CF and their caregivers. It encourages patients to stay compliant with their medications and to live a healthy lifestyle.
CysticLife (CL) is an organization that works to positively transform the lives of the cystic fibrosis community by providing life-improving resources, community support, increasing awareness, and raising funds. CysticLife has become the social network for the CF community. This positive, uplifting Web site is a central location for the community to share tips, questions, ideas, experiences and encouragement. Members have the ability to maintain a profile, post blogs, ask and answer questions, directly contact one another, and search others within the community by location, relation to CF, age and gender.
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.
www.CFLF.org CFLF assists in providing avenues toward healthy and active lifestyles through recreation, thereby educating people with Cystic Fibrosis on the critical psychological, social and emotional connections between their lifestyle and their health.
Cystic Fibrosis World Wide Cystic Fibrosis Worldwide (CFW), formed after the merger of the International Association of Cystic Fibrosis Adults and the International Cystic Fibrosis (Mucoviscidosis) Association, is dedicated to improving quality of life and life expectancy for persons living with cystic fibrosis globally. CFW has over 60 member countries with a number of members coming from developing parts of the world. With these new memberships comes an awareness of the desperate situation facing those who have cystic fibrosis, caregivers or medical professionals in developing countries.
Reaching Out Foundation. Enhancing life for patients and families with cystic fibrosis.
Let’s Rock CF A blogspot dedicated to all things CF, run by Emily Schaller.
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.
Axcan Pharma Axcan is a privately-held leading specialty pharmaceutical company focused on gastroenterology. We market a wide range of products to treat gastrointestinal diseases and disorders, such as Inflammatory Bowel Disease, cholestatic liver diseases, Irritable Bowel Syndrome and pancreatic enzyme insufficiency (CF).
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.
cafepress 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
American Diabetes Association (ADA)
Joslin Diabetes Center. Research, treatment, patient and professional education.
Yext Podiatrists has the most complete directory of foot sports therapy across the country. Enter your zip code to find podiatric sports therapy in your area.
FINANCIALRESOURCES
Genentech, Inc., manufacturers Of Pulmozyme, has an Endowment Program for CF.
Scandipharm “Comprehensive Care Program for CF”.
National Transplant Assistant Fund is the leader in fundraising assistance and support for transplant and catastrophic injury.
HUMOR
American Association for Therapeutic Humor.
Official Peanuts website and comics by other cartoonists.
KNOW YOUR RIGHTS
Disabilities Rights Education and Defense Fund (DREDF)
United States Equal Employment Opportunity Commission (EEOC)
ORGAN DONATION & TRANSPLANTATION ORGANIZATIONS
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.
TransWeb. All about Transplantation and Donation.
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
American Association for Respiratory Care.
The American Lung Association National Office.
National Jewish Center for Immunology & Respiratory Medicine.
the Pharmaceutical Research and Manufacturers of America.
medicare.gov This website provides information about healthcare options under Medicare or complementary to Medicare under its “Prescription Drug Assistance Program” section.
www.rxhope.com This website offers resources for consumers, advocates and health care providers in accessing patient assistance programs offered by federal, state, county and charitable organizations.
needymeds.com This website provides information on drug assistance programs offered by pharmaceutical companies.
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.
YoYsearch.com – a convenient interface to ten types of search.
PMD Healthcare – Personal medical devices for a healthier you. Dedicated to creating innovative, easy-to-use, portable, and affordable personal medical devices, and to empowering people worldwide to improve their healthcare and quality of life.
SUPPORT
PathoGenesis Corp. Information on TOBI.
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.
mdjunction.com A free online support group. Be around people who are dealing with the same challenges as you are and understand you best.
TRAVEL RESOURCES
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.
doctordirectory.com Database of approximately 500,000 doctors in U.S.A. Can be searched by name, specialty, address or telephone number.
hospitaldirectory.com A database of over 10,000 hospitals can be searched by state, city or zip code.
Breathin’ Easy: Offers Freedom: A Guide for Travelers with Pulmonary Disabilities, which 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)
Vestibular Disorders Association “VEDA”.
Wobblers Anonymous. An international support network of people who have lost vestibular function due to ototoxic substances, especially gentamycin.
