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Genetic Alliance 2005 – Washington DC

 In External conferences Genetic Alliance

Genetic Alliance 2005 – Washington DC

Report Genetic Alliance 2005 – Washington DC
Capitol USA

On behalf of our association, Lex van der Heijden attended the annual Genetic Alliance meeting near Washington DC from 29 to 31 July.

The title of this conference was “Leadership in alliance: leveraging voices, advancing a vision.”
The goals of this trip were to :

  1. Share knowledge and experience with other patient organizations.
  2. Meet with other organizations and individuals (networks).
  3. Attend workshops, etc., for example, to improve the quality of our organization.
  4. Organize a first CMTC meeting in the USA and give a presentation.
  5. Consult with the director of the Office of Rare Diseases (NIH) about the opportunities for sponsoring our genetic research. Dr. Maurice van Steensel put together material that Lex discussed with the director.

On 29 July, Lex spent the entire day in a workshop entitled ‘leadership in action’. This workshop covered practical issues such as communications, fundraising and organizational development. There were several points that we as a committee can use and will definitely pursue.

That evening Lex held a “poster session” with the aim of presenting our organization to anyone interested.
A large poster (A0 size) was sent to all members by email, and Lex brought CMTC pens, brochures, chocolate, and “stroopwafels” (waffles sandwiched around syrup). The CMTC pens were laid out in a pile, and the effect of all this was very impressive!  Many will not forget us and that’s the whole point.
During this meeting, Lex also met a number of people with whom he had met during the NORD conference in October 2004 in the USA. These people knew our association and remembered us as well, thanks to the “Sinterklaas” candy they’d had. Lex heard from various people that they won’t soon forget our association and the typical Dutch treats.

Saturday was started after breakfast with a plenary session chaired by Alan Guttmacher (Deputy Director, of the National Human Genome Research Institute) with a presentation, particularly about medical family history. In the USA, an Internet-based application is under development.
Creating a family medical history is much more important than you might initially think. These data can determine the severity and likelihood that a particular disease can occur in someone, and which steps could be taken to prevent possible effects of the disease.

Saturday afternoon Lex spoke extensively with Steve Groft, director of the Office of Rare Diseases (NIH) about (among other things) possible sponsorship of our genetic research.
Brazil has also recently set up an organization like the Genetic Alliance.
On Saturday, Lex attended a number of sessions. The formal part concluded that evening with a dinner combined with an awards ceremony for people who have provided exceptional services.
On Sunday there were two more sessions.  After lunch, Lex travelled to Cincinnati and then back to Amsterdam.

A few things Lex particularly noticed during this conference:

  1. The patients’ movement in the USA is very active and has achieved much.
  2. In the USA the large amount of patient organizations work closely with physicians, research centers, industry and various government organizations. People know each other personally and often the atmosphere is excellent.
  3. The people in the Genetic Alliance are very active, motivated, have a large network with many people at the right level and form a strong team. This is especially true of Sharon Terry, President and Chief Executive Officer, someone with an incredible amount of energy who seems to work 24 hours a day. One argument was that when Sharon relaxes, which does not seem possible, she can handle 40 e-mail messages per minute.
  4. The conference was well organized, the food was good and varied and the atmosphere was warm. Getting to know complete strangers was simple.

Saturday night Lex met the family of a new patient who had returned from Florida Friday night and then driven approximately six hours just to meet him. It was a special experience for all of us.
In summary, this was a very intense but fruitful period whose long and short term effects will be visible.

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