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.

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.

DIABETES AND NUTRITION

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

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

FINANCIAL ASSISTANCE

Genentech, manufacturer of Pulmozyme, have 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.

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.

Vertex Pharmaceuticals–The Science of PossibilityFinancial Assistance and Patient Support Program for INCIVEK and KALYDECO.

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.

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

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.

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)

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

 

PHARMACIES

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.

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.

HHCS Health Group, Florida CF Pharmacy for all CF medication needs.

Kroger It is our mission to be the preferred pharmacy service by optimizing outcomes and providing a high-touch, caring experience.

PULMONARY AND GENERAL MEDICINE RESOURCES

American Association for Respiratory Care.

The American Lung Association National Office.

The Pharmaceutical Research and Manufacturers of America.

Drugwatch is dedicated to informing you about dangerous prescription drugs and medical devices.

SCHOLARSHIPS

CF Roundtable Academic Scholarships

Boomer Esiason Foundation Scholarships

CFRI Scholarship Programs

CF Scholarship Foundation

Cystic Fibrosis Lifestyle Foundation Grants

Elizabeth Nash Foundation

Living Breath Foundation Scholarships

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.

TRAVEL RESOURCES

U.S. Dept of Transportation Traveling with Disabilities

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)

Vestibular Disorders Association “VEDA”.

Wobblers Anonymous. An international support network of people who have lost vestibular function due to ototoxic substances, especially gentamycin.

One thought on “CF Links”

Comments are closed.