- General CF Resources
- Diabetes and Nutrition
- Patient Assistance Programs
- Home Health/Skilled Nursing
- Know Your Rights
- Pulmonary and General Medicine Resources
- Support Online & Facebook Groups
- Transplantation & Organ Donation Organizations
- Travel Resources
- Vestibular Disorders (Inner Ear and Balance Problems)
GENERAL 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.
Cystic Fibrosis Research, Inc. Connecting CF Resources with Community Needs
Boomer Esiason Foundation. Raises money for research, promotes public awareness, updates news on research, etc.
CF Legal Hotline -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. Contact CFLegal@sufianpassamano.com
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.
Let’s Rock CF A website and blogspot dedicated to all things CF, run by Emily Schaller.
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.
The Cystic Fibrosis Family Connection Provides support with the non-medical aspects of living with the disease. CFFC programs facilitate the exchange of information among the CF community, provide financial assistance for costs not covered by insurance for patients served by the Rochester CF Center and increase public awareness about CF.
DIABETES AND NUTRITION
http://www.diabetes.org/ American Diabetes Association (ADA)
Joslin Diabetes Center. Research, treatment, patient and professional education.
PATIENT ASSISTANCE PROGRAMS
Click Here to see our programs
HOME HEALTH/SKILLED NURSING
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.
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.
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.
Home Health Agency Center at the Centers for Medicare & Medicaid Services
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.
KNOW YOUR RIGHTS
CF Legal -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. Contact CFLegal@sufianpassamano.com
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.
HHCS Health Group, Florida CF Pharmacy for all CF medication needs.
Kroger Specialty Pharmacy, Your full service CF Pharmacy with access to all CF medications that offers personalized service and care along with financial assistance, clinical support, refill reminder calls, nutritional, vitamin and medical equipment support and a Patient Advocacy team that has personal experience with CF.
PULMONARY AND GENERAL MEDICINE RESOURCES
Drugwatch is dedicated to informing you about dangerous prescription drugs and medical devices.
SUPPORT ONLINE & FACEBOOK GROUPS
CF Roundtable Facebook – Join the discussions in the CF Community!
CF Connect is a Facebook group sponsored by CF Roundtable and is dedicated to the lives of those affected by cystic fibrosis.
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
CysticLife has become the social network for the CF community. This positive, uplifting website 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.cysticlife.org
CYSTIC-L is a gmail support-group for people with Cystic Fibrosis and their friends, families, and health-care providers.
CF Living Facebook is a support group 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.
cysticfibrosis.com Support for people with CF, their families and care-givers.
mdjunction.com A free online support group. A community of patients, family members and friends dedicated to dealing with cystic fibrosis, together. Be around people who are dealing with the same challenges as you are and understand you best.
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.
TRANSPLANTATION & ORGAN DONATION 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.
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.
VESTIBULAR DISORDERS SOURCES (INNER EAR AND BALANCE PROBLEMS)
Wobblers Anonymous. An international support network of people who have lost vestibular function due to ototoxic substances, especially gentamycin.