Cystic Fibrosis Worldwide, founded in 2003, is an organization working to provide information about CF, to CF patients, governments, and laypersons worldwide. We have achieved this by making our website and Newsletter available in multiple languages. This has allowed us to reach patients in various countries and communities that previously had no exposure to such resources.
CFW's extensive website (http://www.cfww.org) was built within the first year of the organization’s operation as a multilingual resource for people with CF. Today it receives over 40,000 hits a month! The website contains numerous publications available for download, including the International Physiotherapy Group's "Physiotherapy in the Treatment of CF," the World Health Organization guidelines for the treatment and management of CF, and implementation of CF services in developing countries, along with a library of published newsletter articles. The website also features an extensive grant and scholarship section, aiding students and health professionals in their pursuit to learn more about CF. Project overviews, conference listings, clinical trials, a charitable art gallery, and fund-raising tips are also available online.
The CFW online forum provides patients with a valuable resource and portal through which they can ask questions and receive information from medical professionals about various topics relating to CF from gastroenterology, genetics, nutrition, psychology, microbiology, and nursing. International experts, patients, and CFW staff respond to postings and generate discussion on important issues in the CF community. You can visit the forum here: http://www.cfww.org/cfforum/
CFW's tri-annual printed newsletter also provides a wealth of information on the latest research, treatments, and therapy. It focuses on the overall well-being and non-medical health of CF patients worldwide. Through the website, patients can access the newsletter in Spanish, Italian, German, French, Portuguese, Greek and Dutch. The international editorial staff and medical advisory board provide a worldwide perspective and extensive CF expertise.
Solvay Pharmaceuticals, Inc. has played a vital role in the development of CFW's communication tools. Solvay (Germany) in 2006 has provided 10,000 Euro, and Solvay (US) has given $7,500 in educational grants to sustain our website, forum, and newsletter. Solvay is a global company based in Brussels, Belgium; and has a presence in over 50 countries. Solvay is focused on three primary scientific sectors: pharmaceuticals, chemicals, and plastics. In particular, the company is committed to the effective management of patient health, while at the same time maintaining “sustainable and profitable growth” in a business sense.
CF Services Pharmacy (CFS) has provided a $5,000 grant to support this important newsletter project. As their slogan suggests, they are “…more than just a pharmacy.” Established in 1988, CFS is a subsidiary of the Cystic Fibrosis Foundation and is focused on improving the lives of individuals with CF through patient advocacy, reimbursement support, and patient assistance programs. In addition, CFS is a full specialty pharmacy that provides essential medications specifically, and only, to CF patients.
One of the main goals of CFW is to expand the spread of information to parts of the world where patients live and may not have had access to information about their medical condition. CFW is working to expand the scope of available information to include translations in Russian, Hindi, Urdu, and Arabic. Funding from Solvay and CF Services Pharmacy will allow CFW to continue to expand their reach to many different regions of the world, through their website, online forum, and regular newsletter.
