Synonyms: CF | Mucoviscidosis
A rare genetic pulmonary disorder characterized by sweat thick mucus secretions causing multisystem disease chronic infections of the lungs bulky diarrhea and short stature.
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 September 2024
Newly diagnosed with
Cystic fibrosis?
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Advocacy Organizations
Breathe Bravely
Giving voice to cystic fibrosis
CF Get Loud
To fight for patients across Canada and help them gain access to rare disease medicine. CF Get Loud made history when we removed federal roadblocks preventing CF patients the ability to access Trikafta.
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.
Cystic Fibrosis Research Institute
The mission of the Cystic Fibrosis Research Institute is to be a global resource for the cystic fibrosis community while pursuing a cure through research, education, advocacy, and support. Our vision is to find a cure for cystic fibrosis while enhancing quality of life for the CF community.
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.
Global Liver Institute
To improve the lives of individuals and families impacted by liver disease through promoting innovation, encouraging collaboration, and scaling optimal approaches to help eradicate liver diseases.
Help Hope Live
Help Hope Live supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. These efforts play a critical role in helping clients access the care and equipment they need to heal, live, and thrive. Unlock a powerful and safe way to raise funds for medical needs with Help Hope Live. They provide one-on-one fundraising guidance, a customizable Campaign Page, bill pay support, and additional benefits based on their 501(c)(3) nonprofit status.
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.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
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.
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
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Clinical Trials
For a list of clinical trials in this disease area, please click here.