Cystic Fibrosis Worldwide has been able to bring sustainable change to many CF populations via target projects aimed at increasing awareness, gaining access to necessary medication and creating specialized CF Centers and CF care teams.  CFW donors and supporters have made these achievements possible and we are very grateful for the continued support of the CF international community.

Here are some of our programs to reach people who suffer from cystic fibrosis around the world

Pancreatic Enzymes listed on the WHO pediatric list of Necessary Drugs

In 2005 CF Worldwide began a campaign to lobby the World Health Organization to  list pancreatic enzymes on the WHO necessary drug list to enable CF patients in both developed and developing countries to receive enzymes free or at reduced cost. Over 80% of all CF patients are born pancreatic deficient. Without the ability to digest food properly, many patients are malnourished and experience pain and discomfort when eating. Malnourishment leads to higher frequency of lung infections which ultimately leads to an early death. By listing pancreatic enzymes as a necessary drug on the WHO necessary drug list, many developing countries now provide enzymes to patients as part of their child health programs. This will increase the ability of patients to ward of infection and maintain a healthy body weight for improved growth and development.  The program was completed in 2008 and CFW has now taken steps to have pancreatic enzymes listed on the Adult Necessary drug list so CF patients of all ages have access to this life saving drug. Click here to view the Online Application at the WHO website.

CFW Website www.cfww.org

The CFW website was launched in June 2002 and has become a source for CF adults, parents and Medical professionals to find information and to make contact with CF specialists from countries around the world. The CFW online library allows user to search articles from editions of IACFA and CFW newsletters.  The Levy Lecture, IPG/CF manual, annual reports and WHO guidelines are also available all searchable by title, author, subject with some articles translated into multiple languages. CFW is currently receiving approximately 30,000 web visitors a month to the CFW website and reaches readers in Europe, Eastern Europe, Russia, all 50 US states and both Canada and South America, the Middle East, Euro Asia and Asia.
 
The CFW website is packed full of important information and allows for communication of our uses via our forums and feedback forms. We offer educational materials, latest research and treatment with an international focus. All articles are free to users and we continue to expand the translation of articles. Our future goal will include Podcast for both he lay and medical CF global community.

Established the Cystic Fibrosis Worldwide Education Program

Cystic Fibrosis Worldwide is a provider of Cystic Fibrosis (CF) educational programs for practicing clinicians, allied health professionals and patients/families globally with a focus on developing countries. Currently Cystic Fibrosis Worldwide educates over 2000 clinicians, patients and family members annually through our network of live, interactive, online, and print educational activities. Our clinical experience is both broad and deep with expertise in inpatient and outpatient treatment of CF to include both well-established and emerging topics in addition to education tailored to primary care practitioners, specialists, allied health professionals and patient home therapy.  
* Education program.

Cystic Fibrosis Worldwide Educational Program, an integral part of the Cystic Fibrosis Worldwide projects, sponsors conferences, online, and print activities as well as other innovative formats of distance education. As a result of these educational activities, Cystic Fibrosis Worldwide fosters the continuing professional development of CF health care providers and the spread of information among patients and family. The offerings are designed to promote the professional development of physicians and health care practitioners and influence their clinical practice behavior for the purpose of improving health outcomes for Cystic Fibrosis patients. Our educational programs are also aimed at families and patients improving daily home care and the development of patient organizations. Achievements with this program to date;

• 1st Regional Cystic Fibrosis Conference in the Balkans

In March of 2009 CF Worldwide hosted the first Balkans Cystic Fibrosis Conference in Skopje, Macedonia. There were over 200 medical professionals in attendance and 73 families and patients from countries throughout the Balkan region. This has led to a wide spread campaign to reach CF patients in countries such as Bulgaria, Moldova and Croatia. In 2010, CFW will work with the Croatian CF Society to host the 2nd Annual CF Conference for the Balkan region.

• 1st Middle East Cystic Fibrosis Conference in Muscat, Oman 

In February 2007 CF Worldwide in collaboration with the Oman Respiratory Society hosted the first CF conference held in the Middle East. Over 300 medical professionals, allied health and families attended the conference. There was wide spread interest in this conference reaching as far as Lebanon and Turkey. The information and education was certified continuing education. Because of the high level of interest in cystic fibrosis in the Middle East, future plans have been made to continue annual conferences throughout the Middle East.  
* CF Middle East Annual Conference in Saudi Arabia

• European Cystic Fibrosis Conference and CF Worldwide Lay Conference

Each year since the inception of CF Worldwide an annual lay conference has been hosted by Cystic Fibrosis Worldwide and the European CF Society.  These lay conferences are aimed at addressing the needs of patients with a wide range of topics and speakers. CF Worldwide Lay conference attracts hundreds of attendees from around the world.  Recent conferences were held in the following cities internationally;
2004 Belfast, Ireland
2005 Birmingham, England
2006 Heraklion, Crete
2007 Belek, Turkey
2008 Prague, Czech Republic
2009 Brisbane, Australia

• Educational Workshops in New Delhi India, Tbilisi, Georgia and Yerevan, Armenia

CFW Workshops are geared to offer intense training for families and medical professionals in targeted areas of treatment such as physiotherapy and nutrition. Specialized equipment such as nebulizers and pep devices are offered free to all patients along with educational guides in home nutrition and physiotherapy.

Established a Cystic Fibrosis Specialized Clinic in Yerevan, Armenia
CF Worldwide, following the World Health Organization recommendations and the European Standards of Care for CF patients, focuses on establishing CF care facilities.  In 2008 with the help of the Cystic Fibrosis Foundation, US State Department programs and Project CURE, we were able to develop a CF Center in the Yerevan State Hospital. We transported necessary CF equipment such as nebulizers for patients and diagnostic equipment to Yerevan via the US State funded program Counterpart International. The CF Center now treats over 70 patients, offers continued education programs for medical professionals and supports continued lobbying efforts to ensure all CF patients receive necessary medication and treatment.
* Armenia project.

Established  the Cystic Fibrosis South Asian Trust and CF Center at AIIMS in New Delhi India
In 2006, Cystic Fibrosis Worldwide began designing and implementing a program aimed at improving life expectancy and quality of life for CF patients born in South Asia.

• The first activities in the program established a patient organization, the Cystic Fibrosis South Asian Trust (CF-SAT). A legal non-profit and non-government society comprised of patients, families and medical professionals. A 5 year strategic    plan was developed for the organization and an office established in New Delhi. This strategic plan included developing and implementing programs aimed at spreading awareness about CF, lobbying for government support and educating families/patients and medical professionals.
• The second activity established annual conferences and workshops for both medical professionals and patients/families throughout major cities in India. This was done in collaboration with the Cystic Fibrosis Worldwide Education Team which includes top specialist and opinion leaders from England, Holland, Sweden, France and Canada.
• The third activity established a team of trained CF specialist at the All India Institute of Medical Science pediatric pulmonology unit in New Delhi.

Currently, CF Worldwide is developing future programs for India that include continued education through annual conferences and further support of the CF-SAT member organization. CFW will financially support staffing for CF-SAT to include a Program Director and Administrative/Fundraising. The goal of this continued program is to help CF-SAT put into action the developed 5 year strategic plan. The desired outcome of this complete program is to improve quality of life and life expectancy among people living with CF and those who will be born in the future in India.

Delivered emergency medication to patients with cystic fibrosis in Gaza after the recent Gaza War
During the recent conflict and continuing to this day, there have been restrictions on necessary medications being delivered to patients in desperate need in Gaza. Because pancreatic enzymes are the most important necessary medication for CF patients, CF Worldwide in partnership with Solvay Pharmaceuticals and United Nations Relief and Works Agency for Palestine Refugees (UNWRA) delivered 3 months emergency supply of CF specific enzymes to over 50 patients in Gaza in March 2009. This operation allowed us to construct a network with which we can continue to supply emergency medication to Gaza and the West Bank in aid of CF patients.

Publication of the Molecular Genetic Epidemiology of Cystic Fibrosis Report in partnership with the World Health Organization
This document is one of a series related to cystic fibrosis (CF) that has been published by WHO in association with CF Worldwide, formerly Cystic Fibrosis (Mucoviscidosis) Association. The publications considered a range of topics including the Distribution of CF, Prospects for Treatment, Prevention of CF, Delivery of Health Care for CF in Developing Countries, Health Care Services for Adults with CF and most recently proposed and planned, The Treatment and Management of cystic fibrosis in developing health care systems. The present publication is intended to provide a point of reference for national and international health organizations, and to help them in planning diagnostics, advisory and therapeutic services for affected patients and their families.