Cystic fibrosis

Get in touch with RARE Concierge.

Contact RARE Concierge

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.

Reference: Access aggregated data from Orphanet at Orphadata.

Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version March 2024

Newly diagnosed with
Cystic fibrosis?

Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.

Get Concierge Help

Advocacy Organizations

CF LifeLine UA

We strive to partner with international medical centres and organisations to create opportunities for knowledge sharing, training and mentoring, contributing to the development of diagnostics and examinations in Ukraine and improving the results of treatment of patients with cystic fibrosis. Our goal is to prolong the lives and improve the quality of life of UA’s patients with cystic fibrosis

Claire’s Place Foundation, Inc.

Claire’s Place Foundation is a charity providing support to individuals, children and families affected by cystic fibrosis (CF). We were founded by thirteen-year-old Claire Wineland who was born with CF. She envisioned this foundation as a source of hope, strength and joy for others living with CF providing both emotional and financial support.

Cystic Fibrosis Reproductive and Sexual Health Collaborative

Our mission is to complete patient-engaged research through partnerships with people with CF, researchers, and advocates. Our research will respond to the health needs of the CF community, provide data for healthcare professionals, and ultimately pave the way for improved reproductive and sexual health resources, healthcare, and knowledge for people with CF.

Emily’s Entourage

Emily’s Entourage accelerates research and drug development for the final 10% of people with cystic fibrosis. By providing leadership and coordination, EE drives high-impact research, cultivates multi-stakeholder collaboration, and facilitates information exchange to speed breakthroughs. Our goal is singular: to expedite treatments and a cure for the final 10% who are waiting with bated breath.

National Organization of African Americans with Cystic Fibrosis

The mission of NOAACF is to engage, educate, and raise CF awareness in the African-American community to help bring valuable resources, knowledge, empowerment, and support to CF patients, families, healthcare professionals, and the community. Through widespread involvement, partnerships, and outreach, NOAACF's vision is to ensure that the Cystic Fibrosis diverse community is educated, informed, and made aware of CF's existence, prevalence, and impact on underrepresented communities. NOAACF's goals are to connect, engage, and raise CF Awareness in the African-American Community and beyond through its national platform and to continue individually, collectively, and synergistically raising cystic fibrosis engagement in the African American community.

The Assistance Fund

The Assistance Fund (TAF) is an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses. We currently manage more than 80 disease programs, each of which covers all FDA-approved treatment for the disease named in the program. Since 2009, TAF has helped nearly 180,000 people access critical treatment for life-threatening, chronic, and rare diseases.

The Bonnell Foundation: Living with cystic fibrosis

Mission Statement: To give emotional and/or financial support to parents who have a loved one with cystic fibrosis. The Foundation also education the community so more people make Our hope is one day no CF parent will experience the pain of losing a child to this disease.  Live – Breathe – Inspire

Clinical Trials

For a list of clinical trials in this disease area, please click here.