Cystic Fibrosis
Cystic Fibrosis (CF) is a genetic disorder that primarily affects the respiratory and digestive systems. It is caused by mutations in the CFTR gene, which leads to the production of thick, sticky mucus that can clog airways, cause lung infections, and obstruct the pancreas, hindering digestion.
Maine Resources
Maine CF Community - A Facebook Page that’s dedicated to “bringing together CF families, providers, supports across the state to strengthen our communication and support statewide.”
MaineHealth - Adult Cystic Fibrosis Clinic - Offers comprehensive care with a multidisciplinary team, including pulmonology, nutrition, social work, and physical therapy. Accredited by the Cystic Fibrosis Foundation, the program provides routine evaluations, diagnostic testing, and access to clinical trials. The focus is on integrating CF management into active lifestyles and enhancing patient education.
Northern Light Health | Cystic Fibrosis Clinic - Eastern Maine Medical Center in Bangor, ME offers comprehensive and specialized care for CF patients through their Pediatric Health Center.
Northern New England Cystic Fibrosis Consortium - Focuses on improving the quality, safety, effectiveness, and costs of care for cystic fibrosis patients and their families. They provide resources such as patient and provider links, video resources, and information on clinical trials and research.
Regional Resources
Cystic Fibrosis Foundation Northern New England - Serving Maine, New Hampshire, and Vermont, this chapter provides support and resources for CF patients and their families.
National Resources
CF Peer Connect | Cystic Fibrosis Foundation - Offers one-on-one peer support for individuals with cystic fibrosis and their family members. It connects participants with trained mentors who share their experiences and provide guidance on managing life with CF. This program aims to foster community and support through shared personal insights and advice.
Claire's Place Foundation - Supports individuals and families affected by cystic fibrosis (CF) through emotional and financial assistance. The foundation provides resources such as extended hospital stay grants, family support, and COVID emergency funds. They emphasize community involvement through fundraising and donations, aiming to offer hope, strength, and joy to those living with CF.
Community Conferences | Cystic Fibrosis Foundation - These Community Conferences are entirely virtual, offering a convenient way for individuals with CF, their families, and healthcare professionals to connect and learn from anywhere. These online events feature expert presentations, interactive breakout sessions, and opportunities for engagement, providing valuable information on the latest CF treatments, research, and care strategies. This format ensures broad access and facilitates a supportive online community.
The Boomer Esiason Foundation - Offers various forms of support for the cystic fibrosis community, including scholarships for students with CF, transplant grants, IVF grants, and financial hardship assistance. They aim to alleviate financial burdens and provide opportunities for better health and education for CF patients and their families.