Resources

Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.

For Patients and Families

  Cystic Fibrosis Foundation – Rochester Chapter - https://www.cff.org/

 

 

 

  Cystic Fibrosis Family Connection "The Cystic Fibrosis Family Connection (CFFC) is a charitable, not-for-profit corporation established to assist cystic fibrosis patients and their families." - www.cffamilyconnection.org/

 

 

  CysticLife.org - a social network just for the cystic fibrosis community. This positive, uplifting web site is the central location for the CF community to share tips, questions, ideas, experiences    and encouragement.  https://cysticlife.org/index.php

 

  CysticFibrosis.com is one of the world's largest social media networks dedicated exclusively to the cystic fibrosis community.  http://cysticfibrosis.com/forums/

 

 

CF Source - many videos that take a deeper look at CF

 

  CFCooking - Healthy Cooking for People with Cystic Fibrosis. Watch videos on YouTube

 

Cystic Fibrosis Research Inc. funds innovative cystic fibrosis (CF) research and offers education, advocacy and psychosocial support programs and services to those with CF, as well as their families and caregivers. http://cfri.org/

 

The Bonnell Foundation provides tools to navigate the difficulties of living with CF.

 

Rock CF is heightening awareness and making sure that an illness that often goes unseen, doesn’t get forgotten.

 

The place to find helpful information about Pulmozyme http://www.pulmozyme.com/cystic-fibrosis-resources

Additional Resources

• Since 2013, the Breathe Foundation has taken great strides to accommodate individuals and families in need of financial assistance http://justbreathecf.org/

• Everyday Health bridges the gap between lifestyle and medical sites, delivering trusted health information as well as fun-to-read tips and insights that make life a little easier https://www.everydayhealth.com/mens-health/outrunning-cystic-fibrosis.aspx
• Team Boomer is a program that: encourages people with cystic fibrosis to incorporate exercise into their everyday lives https://www.esiason.org/team-boomerJerry Cahill provides inspiration in your  CF journey http://www.jerrycahill.com/you-cannot-fail/
• Gunnary Esiason created this blog to inspire, and now it has grown and changed with the CF community http://www.gunnaresiason.com/
• USACFA is an independent 501(c)(3) non-profit, tax-exempt organization which is operated entirely by adult volunteers who have cystic fibrosis (CF). Sign up for their free newsletter http://www.cfroundtable.com

Contact Donna Germuga by email to add your services to this list, make changes or suggestions.