Living with a chronic disease brings many challenges throughout the lifespan for the whole family. Your CF team is here to help with those challenges, whether they are medical, emotional, educational, financial or employment related. Our licensed clinical social worker is available at any time to talk with you, either in clinic or by phone or appointment. If we don't have the resources you need here, we can help connect you. Below is a list of most commonly used resources but this is not intended to be an exhaustive list. Please contact your CF social worker for more information.
www.cff.org - General Information, Advocacy, Patient Assistance, research and center specific information
CFF - Compass - Case management, advocacy and resources for patients and families through the CF Foundation
The Healthwell Foundation is a non profit organization which can provide funding for certain CF treatments, equipement and nutritional supplements for CF patients who qualify financially. Please ask the social worker in our center for more information or go to their website to apply directly.
www.cfliving.com – Information and support for patients and caregivers
www.mycysticfibrosis.com – Personalized website, offers charts for care tracking, action planning, stories from other patients and newsletters.
www.cfvoice.com – educational website for all ages, need to register but has age specific information, activities, tips, stories, etc. Also has webcasts, videos, etc., also age specific.
www.cysticfibrosis.com – recipes, section for kids, parenting survey, Know CF
www.cysticlife.org – This is a website where patients and families find one another, talk about the issues that affect them and get information. This is a social networking site, not a medically monitored site.
www.thelittleacorn.com – offers journals for tracking care, visits, hospitalizations, etc. for patients with specific health conditions. Journals are sold, they are not free.
www.parentingchildrenwithhealthissues.com – Website with informational articles on parenting issues for families with children with health care issues. Also offers a book called, “Love and Logic” by Dr. Foster Kline.
Blooming Rose Foundation – Provides social services, positive contacts and hope to families immediately after diagnosis.
FACEBOOK – CF Foundation has its own site on Facebook and many patients connect with other CF patients and families through Facebook. Please remember that facebook is not a supervised website so younger people should be monitored.