There are ALOT of really great resources for families and individuals living with cystic fibrosis (CF). Here are some of my favorites. They are listed by category and then alphabetically. Lisa
The United States Cystic Fibrosis Foundation (CFF) provides information about living with CF, treatments and research. The CFF assures the development of the means to cure and to control CF and improve patient’s quality of life.
The CF Foundation of Canada funds research towards the goal of a cure or control for cystic fibrosis, supports high quality CF care, promotes public awareness of cystic fibrosis, and raises and allocates funds for these purposes.
The Cystic Fibrosis Association of Ireland (CFAI) was set up in 1963 to increase knowledge and awareness of CF and to give advice and support to people with Cystic Fibrosis and their families. CFAI provides support and assistance to people with CF and their families. There are currently 22 branches of the Association throughout the country, with approximately 1,500 members nationally.
The ECFS is a Society of European and international experts in all fields of CF research. With cross-border partnerships, the ECFS is creating a network of European and International CF specialists to promote and stimulate the exchange of information about CF.
The Boomer Esiason Foundation is a dynamic partnership of leaders in the medical and business communities joining with volunteers to heighten awareness, education and the quality of life for those affected by CF.
This website is owned by Novartis and "is an online community for people of all ages living with cystic fibrosis. A place for motivation, inspiration and connection to the CF community." Includes videos, articles, and games for the kids.
This website is owned by Genentech and is a resouce center for people of all ages living with cystic fibrosis. Includes helpful articles and video clips.
Jerry Cahill, a CF'er in his mid-fifties, interviews people who are connected to CF in all different walks of life: CFers, parents, medical professionals and others. Jerry himself is a very inspiring person and focuses on the importance of exercise as an important part of staying fit with CF.
Discover the skills to raise happy, healthier children with CF. Free video, audio, and other resources provide effective, practical tools to empower, motivate and communicate with children of all ages. Based on the popular Love and Logic ® parenting program (www.loveandlogic.com).
Discover practical "how to's" including handling school issues, food challenges, communication, and even tips for successful visits to Disney! Lisa C. Greene, a mom of two children with cystic fibrosis, parent coach and author, shares her personal experiences and professional expertise in raising children with CF.
A social network providing the CF community with peer-generated tips, information and encouragement with access to blogs, forums, reviews and user profiles, as well as the ability to directly communicate with other members.
The Blooming Rose Foundation was created to give hope to families immediately following a Cystic Fibrosis diagnosis, fundraise to positively reach a vast array of individuals and offer an online resource for individuals, families, and friends to find up to date research, links to encouraging websites and blogs as well as a way to connect with other families and adults with CF.
CFLF is a non-profit organization founded by an individual with CF. The cornerstone of CFLF’s programs are recreation grants to support adolescents and young adults with CF in their pursuit of physical activities that are both therapeutic and fun.
The Elizabeth Nash Foundation was established in 2003 by her family to honor and perpetuate Liz’s lifelong example of giving and to continue her fight against Cystic Fibrosis. The Foundation currently focuses its investments in two areas: CF Research and Scholarships for individuals with CF.
The Mauli Ola Foundation was founded in 2008 to promote awareness of genetic disease and support for patients. One of the Foundation’s programs is Surf Experience Days, which pairs professional surf instructors and novice surf students who have Cystic Fibrosis to introduce them to the healing properties of exercise, ocean air, achievement, and fun in a supportive environment.
Disclaimer: The website information provided here is simply as a courtesy and may change without notice. We have not screened these references based on any standards of finances, morality, religion, politics, etc. We are making no assertions or recommendations of the quality of these organizations. In fact, just because we have listed a company doesn’t mean we endorse them and vice-versa. If you are considering donations, please be sure to do your own research. The Better Business Bureau Wise Giving Guide is a great place to start at www.give.org.
The information published on this website or in any connected material is the opinion of Lisa C. Greene dba Happy Heart Families only and is not meant to replace professional medical or mental health care. Persons should always seek the advice of a medical professional when making decisions about personal healthcare or treatment.
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