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JUNE - JULY 2004
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27th European Cystic Fibrosis Conference
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Birmingham,
2004
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The 27th Annual
CF Conference was a great success! All present at the Annual
Business meetings expressed positive support and enthusiasm
for the projects developed in 2003. With solid financial positioning
and a goal to build a strong strategic fundraising plan, the
future of CFW looks very promising.
The
UK Trust
 |
27th
Annual CF Conference |
Cystic Fibrosis Worldwide was proud to be a part of the 27th
ECF Conference hosted by the UK Trust.
During this conference CFW had the opportunity to organize
its own meetings. The 2nd Annual Business Meeting was on June
12, 2004. The representatives of the national associations
were pleased to see that in the past year, CFW made strong
progress towards becoming a champion of creating connections
in the international CF community and helping developing countries
bring up their standards of CF diagnosis and care.
If
you want to learn more about this, you are cordially invited
to read our Annual
Report 2003.
On
Sunday June 13, 2004 the UK Trust organized their biennial
lay conference 2004 incorporating Cystic Fibrosis Worldwide
lay programme. This programme covered many aspects of CF such
as the latest research, gene therapy update, the role of parents
in adult care, challenges of adult hood, fear and hope and
getting through the day, and the best clinical care.
The scientific and lay
conference gave new insight on CF treatment and research combined
with the fabulous entertainment and food, made for a spectacular
visit to the City of Birmingham. For more information about
the June 2004 Conference please visit the UK
Trust website.
CFW
President's Overview
"As
CFW we had the opportunity to have our Annual Meeting and
Lay Conference in Birmingham U.K. together with the European
Conference. This year the conference was in Birmingham because
the UK-Trust celebrates its 40th anniversary.
Since 2000 we have been
busy preparing this meeting and the conferences. We had
a one day Annual Meeting in which we were able to inform
our members about the activities of CFW over the past year.
I am very happy to say that they were excited about the
way CFW is developing projects in countries where the care
for those with CF is not so well organized. Christine Noke
presented the project in Georgia. Many members offered their
help in one or another way. Also the capacity building project
that was set up together with the University of Maastricht
in The Netherlands and with the WHO was received very well.
It is clear that
the way CFW is developing needs good governance. This will
be a major point of attention
of the board of directors the coming years. I hope that
we will see all our members next year in Crete".
Herman Weggen
President CFW
Related links:
Read
the Joseph Levy Memorial Lecture and The Ettore Rossi Medal
Lecture of the ECFS. Looking back over 40 years and what
the future holds. By
James Littlewood. |
| Solidarity
Fund |
CFW
began to raise extra money in the form of a Solidarity Fund
enabling lay people (people representing CF patients associations
and/or CF patient groups) involved in CF of developing countries
to attend in Birmingham the 27th European Cystic Fibrosis
Conference in June 2004. Birmingham was the pilot project.
It was a great pleasure to have Mr. Hafeez Ahmed, parent of
a CF son, from India and Ms. Khatuna Mgebrishvili from Georgia
with us in Birmingham.
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Hafeez
Ahmed |
Mr. Hafeez
Ahmed is a professor of fine arts at a university in New Delhi,
India. His six-year-old son has cystic fibrosis. In his country,
CF is virtually unknown and knowledge of effective treatment
methods is rather much non-existent. He also believes that
there are many Indians who have and are dying of CF but since
India’s understanding of the disease is so poor, these
people haven’t been diagnosed in order to receive treatment.
 |
Khatuna
Mgebrishvili
|
Ms Khatuna
Mgebrishvili together with our project manager Christine Noke
have a main role in the effort to create a CF clinic in Tbilisi,
capital of the Republic of Georgia. For Khatuna it was very
important to attend the Birmingham conference giving her the
opportunity to meet with people involved with CF communites
globally.
The CF clinic in Tbilisi is at this moment the main project
and it is within the intention of CFW to run more projects
in Latin America and in the Eastern part of the world. With
these projects CFW is creating connections in the international
CF community and helping developing countries bring up their
standards of CF diagnosis and care.
We are looking forward to receiving reports from the recipients
about their visit to Birmingham and will post them to the
website soon.
Related
links:
CFW Educational
Grants
CFW
Solidarity Fund |
| Children’s
Republic Hospital in Tbilisi Georgia, phase I of our pilot
project |
|
The
construction of the CF Clinic in the
Republic of Georgia |
The Project
to build a CF clinic in the Republic of Georgia has been moving
along ahead of schedule. Construction has been completed and
we will now begin painting and decorating. A grand opening
will be arranged for November with the First Lady of Georgia
as the Guest of Honor.
 |
 |
Levan
Jugheli, Deputy Minister of Health, Khatuna Mgebrishvili,
Secretary
of CF Georgia, Christine Noke, CFW Project Manager,
Sandra Roelofs, First Lady of Georgia, and Herman
Weggen President of CFW |
CFW
and the Charity Foundation of Georgia were recently invited
to Brunch with Sandra Roelofs,
the first Lady of Georgia and Levan Jugheli, Deputy minister
of Health in Tbilisi, Georgia. During brunch many issues
were discussed and plans to build a state budget to support
the clinic and CF patients began to take shape.
Solvay
Pharma has generously donated Creon
and offered to translate information brochures in the Georgian
language. These brochures will be distributed to all the
hospitals and health care clinics throughout Georgia by
the Health Ministry. Information in these brochures will
aid in diagnosis of CF and inform people about the Georgian
National CF Center.
Bob Beall and The Cystic Fibrosis
Foundation donated a Spirograph and equipment to perform
sweat tests for the newly constructed Laboratory in the
clinic. The German Mucoviscidosis
organization donated Physiotherapy manuals, translated
into Russian to offer free to patients and their caregivers.
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Children’s
Republic Hospital |
As a first
stage to educating the clinical team who will operate the
CF Center, Brigetta Strandvik MD, PhD, Professor of Pediatrics
will host Dr Urjumelashvili at the Goteborgs University Department
of Pediatrics for a 2 week training session. Dr. Natia Urjumelashvili
is currently working at the Children's Republic Hospital in
Tbilisi and will specialize in CF care at the newly developed
CF Center.
 |
| Maartje
Schaap |
Maartje
Schaap, a PhD student at the University of Maastricht recently
joined the CFW team. Maartje will work to evaluate the outcomes
of the project with an objective to develop health-care infrastructure
for the management of CF in the Republic of Georgia and to
disseminate the development plan to both other chronic diseases
and other developing countries. A
special thanks to the Cystic
Fibrosis Foundation, USA and The Canadian
Cystic Fibrosis Foundation, Canada for their financial
support which made this evaluation possible.
Please
see our annual
report for more information about the many activities
of CFW.
|
| The
future of the CFW newsletter |
Dear Newsletter
Subscribers,
Ella Weggen has been officially
named the CFW Newsletter Editor. Ella is from the Netherlands
and will operate the editors office from her home in Amsterdam.
| |
| Ella
Weggen,
CFW Newsletter Editor |
"Dear
Subscribers,
It is a great pleasure to be the new editor of the CFW newsletter.
In short I will first tell something about myself. My name
is Ella Weggen and I am a 20 years old student of Political
science in Amsterdam, the Netherlands. My brother, Rick, had
Cystic Fibrosis, but unfortunately he died last year. My father
has always been quite active for CFW, doing so many good things
for people who suffer from CF. This is why I told him that
if there is anything I could do to help in any way, that I
would love to. I think that the spread of information and
the awareness of CF in the world are very important. I hope
I will be able to provide this. My
goals are to produce an interesting and professional newsletter
that is understandable for everyone in the whole world.
The articles will be in different areas. I will keep you
up to date what is happening in the CFW organization; what
progress the several projects in developing countries are
making. In every newsletter there will be an article about
one specific country, about the PWCF of that country and
the national association. An important part of the newsletter
will be written by professionals in the medical, physiotherapy,
nutrition or other areas.
If
there are any questions or suggestions concerning the CFW
Newsletter, please let me know, and I will see what I can
do with them. You will hear from me again, when we will
publish the first Newsletter in a couple of months!
Many
kind regards,
Ella
Weggen
Editor |
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