Date: 8/21/2009 8:31 am
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Fabry International Network (FIN) August 2009 – Newsletter
Hello all Fabry International Network (FIN) members and stakeholders
The Fabry International Network Board of Directors would like to provide you an update of activities and events since the last FIN newsletter of December 2008.
FIN has now scheduled the FIN Member Conference and Meeting for February 12 – 13, 2010 in Amsterdam, the Netherlands. All FIN Members are invited to attend! This meeting is open to not only the representatives of the FIN member organizations but also the FIN Medical Advisory Board and the representatives from the main sponsors including Amicus Therapeutics, Genzyme and Shire. Louise O’Meara from the IISC will participate as a facilitator. In addition to great interaction on various issues and subjects, we will exchange ideas on how to grow FIN as well as improve two way communications between FIN members and other stakeholders. Elections for board members will also take place. The current plan is to meet at the same hotel we met in February 2008.
Please save the date and let us know if you can attend this conference as well as suggestions for agenda items and/or topics.
The primary aim of the Fabry International Network (FIN) is to facilitate collaboration between organizations to support those affected by Fabry disease. It seeks to do this primarily through enabling communication, promoting best practice and acting as an independent forum for Fabry Associations. The board is now developing some draft values, and working guidelines which will form part of the meeting in February 2010.
The FIN board has changed slightly with the addition of Lut De Baere, current President of BOKS, Belgium patient organization for all metabolic diseases. Lut is also the patient representative of the Foundation of Rare Diseases and Orphan Drugs. This group is preparing the National Plan for Rare Diseases in Belgium. Also Christina Graef Christensen of Denmark recently resigned from the FIN board for personal reasons.
The FIN board is very pleased to introduce the latest member of the Medical Advisory Board. She is Colleen McNeil RN, BN and is the Nurse Clinician for Lysosomal Storage Disorders at the Inherited Metabolic Disorders Clinic of the Alberta Children's Hospital in Calgary, Alberta, Canada. Colleen works with Dr. Robin Casey and other Fabry and LSD experts and is a wonderful addition to our great MAB team.
The other members of the FIN Medical Advisory Board are:
· Dr. Michael Beck, Germany
· Dr. Hans Aerts, The Netherlands
· Dr. Annick Raas Rothschild, Israel
· Dr Stephen Waldek, United Kingdom
The FIN board has been meeting regularly utilizing some of the internet tools that are now in place which were provided by Cambridge Publishing Group. These include virtual meetings and webinars. As a board we still meet via telephone conference call however use the internet to share documents during the meeting. We are also planning to move to virtual meetings so we can actually see and hear each other. This may be a way in the future that we can all connect with each other regularly.
FIN believes that we must learn from each other and to facilitate collaboration between organizations. Therefore FIN has developed an extension of the FIN website via https://www.myconnect.org which will include a community for each FIN member organization, the FIN Medical Advisory Board and FIN Electronic Library. FIN now has members from EU, North and South America, and the south pacific (Australia and New Zealand) and we are asking each member organization for its updated FIN contact and its relevant and important information. (i.e. status, goals, and plans). In addition we are also asking you for any information and stories that should be shared with the world wide Fabry community.
The first FIN survey is now finally ready! It is available online at http://www.cpgnet.com/FINSurvey.nsf Unfortunately the translation software Cambridge has is still in development so the survey can only be completed in English.
Please take a few minutes to complete this survey. The objective of this first survey, targeted for FIN members only, is to provide input on FIN strategic direction and priorities. We hope you and your respective colleagues in your countries Fabry organization can complete it prior to September 1, 2009.
As we now have the ability to post and complete FIN world wide surveys online as well as collect data in a secure fashion, the board is now developing a second survey which will target a larger audience world wide.
The FIN Board together with the FIN MAB and two representatives of the three main sponsors of FIN (Amicus, Shire and Genzyme) will meet together in Amsterdam on September 4 – 5, 2009. The main objectives of this meeting are to share information and agree how we can best work together in the interests of Fabry patients worldwide. In addition we will begin preparations for the agenda and topics for the FIN Membership meeting to be held in Amsterdam on February 12 – 13, 2010.
Once or twice every year, representatives of the FIN board are invited to various meetings and conferences. In an effort to promote FIN, a PowerPoint presentation has been developed but more importantly a wonderful and dynamic poster. It is a great way to share with others who and what FIN is. Our goal is to reach various stakeholders in different countries around the world who are not aware of FIN. We continue to reach to other countries in the hopes of increasing the number of FIN members. If you would like an electronic copy of this poster, please let the board know.
In an effort to improve communication, FIN has established with Cambridge, secure email addresses for three positions of the FIN Board. They are:
You may already be aware of the current situation that if no changes are made in current Fabrazyme product usage, there will be a temporary shortage of Fabrazyme in September 2009 due to an interruption in production of Fabrazyme at Genzyme's manufacturing facility in the USA. FIN website has a temporary link to keep all updated which can be found at http://www.fabryintnetwork.com/home/navigatie1/guidelines.
The FIN board is always eager and interested in hearing from its members. If you have any articles that you think should be featured please send them to any of the FIN board. This will help in developing the FIN newsletter, which we would like to produce every six months.
The FIN board looks forward to not only hearing from you but in working more closely with you all. Your suggestions, input and support are most welcome. We need you all to share and engage with us to enable FIN to move forward and grow into a truly world wide organization that will benefit all Fabry patients, family members and care givers.
Thanks and take care!
Rune Sedal
President, Fabry International Network
on behalf of the FIN board of directors
www.fabryintnetwork.com
