Living with cystic fibrosis (CF) is a challenge. You’re going to need lots of support. If you live in the United States, the Cystic Fibrosis Foundation (CFF) is one of your best allies. Getting hooked up with them should be your first step in building a support network.
About the CFF
The CFF is a non-profit agency that is supported by charitable donation. Since their beginning in 1955, the CFF has grown to a nationwide organization with 80 branch offices and local chapters. Their mission is to “assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease” – and they’re not just blowing hot air. The CFF is a very active and respected organization that follows through on their commitment to people with CF in many ways.
How the CFF Can Help You
Education
Visit the CFF website, or your local branch office, and you will find scores of information about CF that is based on the most current research. Some of the educational resources include:
- Legal hotline with lots of information about your rights as a person with CF
- Webcasts and video presentations from conferences, CF physicians, and researchers
- Written information about treatments, nutrition, and many other topics related to life with CF
Research
The CFF supported the research that led to the discovery of the CFTR gene, and continues to support the research and development of new treatments.
Treatment
The CFF does not provide direct treatment to patients, but they do play a huge role in ensuring that people with CF have access to the best treatments available. The CFF helps you get the treatment you need in several ways:
- CF Treatment Guidelines - Based on current research, the guidelines are the road map for doctors to follow when planning your treatment.
- CF Care Centers – The CFF accredits and provides funding for a network of more than a hundred specialized CF care centers around the United States. When you seek treatment at a CFF accredited care center, you can rest assured that you are receiving the best treatment available that follows the CFF guidelines.
- CF Services Pharmacy – Helps you get CF medications delivered to your door and can also help you with insurance reimbursement issues.
- CF Patient Assistance Foundation (CFPAF) - Offers financial assistance for some CF medications and equipment.
Advocacy
The CFF fights for you in Washington, supporting legislation and making sure your voice is heard on issues that are important to those with CF.
Can the Cystic Fibrosis Foundation Help Me if I Don’t Live in the United States?
No matter where you live, you will benefit from the CFF’s research and treatment development. However, the other services offered by the CFF are limited to people who live in the United States. If you live elsewhere in the world, you’ll want to contact the organization that serves your country to find out how they can help you.
Find Your Country's CF Organization
| If You Live in… | Your National CF Organization is… |
| Australia | Cystic Fibrosis Australia |
| Austria | Cystische Fibrose Hilfe Österreich |
| Belgium (Flemish) | Belgische Vereniging voor Strijd tegen Mucoviscidose |
| Belgium (French) | Association Belge de Lutte contre la Mucoviscidose |
| Canada | Canadian Cystic Fibrosis Foundation |
| Denmark | Danish Cystic Fibrosis Association |
| France | Vaincre la Mucoviscidose |
| Germany | Mukoviszidose e.V |
| Ireland | Cystic Fibrosis Association of Ireland |
| Israel | Cystic Fibrosis Foundation of Israel |
| Italy | Fondazione Ricerca Fibrosi Cistica |
| Netherlands | Nederlandse Cystic Fibrosis Stichting |
| New Zealand | Cystic Fibrosis Association of New Zealand |
| Norway | Norsk Forening for Cystisk Fibrose |
| Portugal | Associaçäo Portuguesa de Fibrose Quística |
| Russia | National Congress on Cystic Fibrosis |
| South Africa | South African Cystic Fibrosis Association |
| Spain | La Federación Española de Fibrosis Quística |
| Sweden | Riksförbundet Cystisk Fibros |
| United Kingdom | Cystic Fibrosis Trust |
