Information

One component of CFFC’s mission is to promote the exchange of information within the CF community. This can be a daunting task because CF is a complex disease with a wide range of expressions across the population. Information on the internet is vast and constantly changing. Our goal is to help the search for knowledge by focusing on the categories listed below. Clicking the category title or the related image will take you to the appropriate page.

National CF Organizations – Organizations with a national perspective have been established in many countries. These organizations maintain websites with comprehensive information with regular updates. We have provided links to English language sites with summaries of key components of those sites. (The CF Canada site offers its content in English and French.)

Life with CF – No one understands life with CF like someone living with CF. We have provided links to sites that offer stories from contributors that cover the broad range of challenges – and successes – that come with life with CF.

Financial Assistance – Life with CF strains personal finances. Limited assistance is available from CFFC as described on our Aid page. Rather than identifying specific resources, we have provided a few links to sites with multiple references.

News – Links to a wide array of news stories are posted to the CFFC Facebook page daily (with a few missed dates) and summarized in periodic posts to this site. We also post significant news items and clinical trial alerts as well as announcements of survey opportunities and upcoming events.

Kit Taylor Memorial Lectures – Our community is fortunate to be the home of the annual Kit Taylor Memorial Lecture series which brings people with national reputations in specific areas of CF care. We have provided links to summaries of the presentations made in the public sessions.

Calendar – We maintain a calendar of key dates: local events, due dates for surveys and other input requests, and financial aid filing deadlines. The calendar opens in a new tab with a default month view grid. You can change the view to a chronological list or one-day display. Each calendar entry provides dates, times, location and sponsoring organization along with a link to a post with more details on the program. The program posts appear on our News page, under Announcements, when the information is received.