www.TipsForCFParents.com

                      Helpful Links and Resources

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

CYSTIC FIBROSIS ORGANIZATIONS
www.cff.org


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. 


CF Foundation of Canada


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. 


CF Foundation of Ireland


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.  


www.cfri.org


Cystic Fibrosis Research Inc's mission is to fund research, provide educational and personal support, and spread awareness of cystic fibrosis. 


European CF Society


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.  


CF EDUCATION
www.esiason.org

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.  


www.CFVoice.com


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.

 

www.CFLiving.com

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.


Foundation Care Pharmacy


Foundation Care Pharmacy has created instructional videos on “How To Use, Clean, and Disinfect” the Altera and the Trio Nebulizers. 

 

www.JerryCahill.com

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.  
 

www.ParentingChildrenWithHealthIssues.com


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). 


www.TipsForCFParents.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.  


SOCIAL NETWORKING & WAYS TO CONNECT
www.cysticfibrosis.com


An online community offering tools and resources for Cystic Fibrosis. 


www.cysticlife.org

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.


SOCIAL SUPPORT FOR LIVING WITH CF
www.BloomingRoseFoundation.com


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.


www.cflf.org


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.

 


www.ElizabethNashFoundation.org


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. 


www.mauliola.org


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.

This website is the sole property of Lisa C. Greene, M.A., CFLE. Lisa is a certified parent coach, certified family life educator, public speaker, and a mom. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.” For more information,  visit visit www.PCWHI.com.  
                               
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