CF Links

CF RESOURCES

Cystic Fibrosis Foundation (National) The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. We fund more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support.

CF Services, Inc. In 1988, the CF Foundation established CF Services, Inc. to offer access to CF medications. Now, as a Walgreens Alliance Pharmacy, CF Services is building on that commitment by providing greater access to these medications and enhancing pharmacy services for people living with CF.

Cystic Fibrosis Research, Inc. Connecting CF Resources with Community Needs

cysticfibrosis.com Support for people with CF, their families and care-givers.

https://groups.google.com/group/cystic-l?hl=en&pli=1, CYSTIC-L is an email support-group for people with Cystic Fibrosis and their friends, families, and health-care providers.

Boomer Esiason Foundation. Raises money for research, promotes public awareness, updates news on research, etc.

http://www.cff.org/livingwithcf/assistanceresources/cflegalhotline/ The CF Legal Information Hotline provides free information about the laws that protect the rights of individuals with cystic fibrosis (CF). It serves as a resource for CF Care Centers, individuals with CF, and their families.

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.

Cystic Fibrosis Mothers is a website dedicated to providing information on parenthood to women with Cystic Fibrosis across the world. Our aim is to provide a central online resource for the global Cystic Fibrosis community. It includes personal stories, research articles, advice and links to further sources of information built up over time. We also provide a private support group on Facebook with over 500 members worldwide. To visit our website go to www.cfmothers.com
If you would like to join our facebook support group please email Karen Vega at kvega@usacfa.org

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.

Foundation Care is a full service pharmacy serving patients in all 50 states. We specialize in the care of patients with chronic conditions like Bronchiectasis, Cystic Fibrosis, and Diabetes and are a trusted resource for disease management for patients, physicians, and caregivers nationwide.

Aptalis Pharma Aptlais, formerly 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).

Vertex Pharmaceuticals–The Science of Possibility  Vertex creates new possibilities in medicine to cure diseases and improve people’s lives. Financial Assistance and Patient Support Program for INCIVEK and KALYDECO.

http://amatteroflifeandbreath.blogspot.com/ A blog by Piper Beatty called, A Matter of Life and Breath.

CF2Chat cystic fibrosis forums Learn, Share, Connect–A CF Community. A forum for those who have CF.

http://www.cysticfibrosisconnect.com/ Fresh information and real support. Fueled by an active, caring community.

http://www.planninghealth.org/ PLANning Health is a non-profit organization focused on providing high-quality patient advocacy services. Our PLAN (Patient Liaison and Advocates Network) will help you improve your health care. Do you need help understanding your illness, medical diagnosis, treatment options and medications? Would you like to improve your doctor-patient relationship and other issues regarding your health? Our Patient Advocates are available to help you with planning and optimizing your health.

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.

www.wikicf.com WikiCF is an open, free website for and by people living with CF, their families and friends. WikiCF is a place to connect and network. You can exchange practical information with others, from the latest treatments to tips on living with CF. Like on any wiki, once registered, anyone can add new content, link to other sites or simply edit and rate existing content and share it with friends. All content is reviewed by professionals to ensure it is of the highest quality. Don’t miss the chance to add your distinct voice helping others in the fight for a better life with CF.

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

http://www.diabetes.org/ American Diabetes Association (ADA)

Joslin Diabetes Center. Research, treatment, patient and professional education.

FINANCIALRESOURCES

Genentech, Inc., manufacturers Of Pulmozyme, has an Endowment Program for CF.

Help Hope Live Formerly National Transplant Assistance Fund, is the leader in fundraising assistance and support for transplant and catastrophic injury.

HUMOR

American Association for Therapeutic Humor.

Comics from newspapers.

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.

National Foundation for Transplants At the National Foundation for Transplants, our goal is to ensure that transplant patients are given every opportunity to fully enjoy the gift of life. We understand how frightening it is to deal with a health crisis, and we also realize how difficult it is to ask for help. That’s why we make each patient a top priority, offering fundraising assistance and guidance to make the process a little easier. If you have any questions about fundraising with NFT or you’d like to get involved to help a patient, please email us, or call 800-489-3863.

PULMONARY AND GENERAL MEDICINE RESOURCES

American Association for Respiratory Care.

The American Lung Association National Office.

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.

http://www.drugwatch.com/ Drugwatch is dedicated to informing you about dangerous prescription drugs and medical devices.

Spiro PD – 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.

http://www.skillednursingfacilities.org, SkilledNursingFacilities.org is a senior care resource that offers a nationwide directory of nursing homes. For over 15,600 nursing homes in our directory, we provide detailed Medicare quality ratings, inspection information and filed complaints to help consumers research the best skilled nursing care options.

https://www.assistedlivingfacilities.org, AssistedLivingFacilities.org strives to serve as the informational resource for assisted living in the United States. We list information on over 36,200 state-licensed assisted living facilities and try to explain the rules and regulations of each state.

http://www.nahc.org, The National Association for Home Care & Hospice is the nation’s largest trade association representing the interests and concerns of home care agencies, hospices, and home care aide organizations.

http://www.cms.gov/center/hha.asp, Centers for Medicare & Medicaid Services

http://www.adultdaycare.org, Adult day care centers typically provide social activities, meals and various health care services that can range from medication management to physical therapy.

http://www.homehealthcareagencies.com, HomeHealthCareAgencies.com has compiled extensive home health care information such as licensing requirements and state contacts. We offer a directory of 11,299 Medicare-certified home health agencies and 18,735 other home care companies in the United States.

SUPPORT

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.

http://www.tripbuzz.com/wheelchair-accessible-travel-guide/ Wheelchair Accessible Travel Guide. Today, individuals who use a wheelchair can travel by nearly every mode of transportation to virtually everywhere in the world. But whether traveling two hours or two thousand miles away, traveling with a wheelchair still requires a lot of thought and careful planning. Wheelchair users must not only consider how to get from point A to point B, but what they need to do to prepare for the trip, whether they’ll find wheelchair accessible accommodations and attractions at their destination, and even little ways to make traveling with a wheelchair easier. Without proper planning, wheelchair users may find traveling more frustrating than accessible.

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.

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.