ICORD 2010 – Buenos Aires
The iCord global conference on rare diseases and “orphaned” drugs (drugs for people with rare diseases) was held from 18 to 20 March, 2010 in Buenos Aires, Argentina. For background information visit www.icord.es. I arrived a few days earlier to meet with one of our two patients in South America, one of whom lives in […]
Global Skin Foundation 2019 – Milan
The Canadian Global Skin Foundation organised two Congresses in Milan (Italy) from 5-9 June 2019.The first congress was held on the 5th and 6th of June and was organized for representatives involved with rare skin disorders (RareDERM). The second Congress was on the 7th and 8th, and partly on the 9th. and was intended for […]
Genetic Alliance 2017 – Washington DC
The Genetic Alliance organization exists 30 years in 2017. This was celebrated with a two-day Conference in Washington DC on 9 and 10 March with about 150 participants. The theme of the Conference was ‘co-creating a healthy future’. The beginning of the conference was a bit unusual: after the opening speech by Sharon Terry (President […]
Genetic Alliance 2011 – Washington DC
On behalf of our association, Lex attended the annual Genetic Alliance conference in Washington DC. They are celebrating their 25th anniversary and the CEO, Sharon Terry, has built a huge global network which we can also use to open doors that would otherwise remain closed. Lex had again taken along some Dutch specialities which were eaten […]
NORD 2018 – Washington DC
The American Organization for Rare Diseases NORD (www.rarediseases.org) organised their annual conference in Washington DC with around 800 participants from all over the world.We first visited this conference in 2004. On Sunday afternoon the conference started with a meeting of about 80 members. NORD announced that they would like to know and publish news and […]
Genetic Alliance 2010 – Washington DC
On Thursday, July 15, 2010, the American Genetic Alliance organization held another “day on the Hill”. We assembled in teams with the object of meeting with as many members of congress as possible. This, of course, included senators, congressmen, and staffers (those who support the representatives in various areas). For those not familiar with the […]
Genetic Alliance 2009 – Washington DC
On Thursday morning, July 16, Lex took the subway with a number of people to downtown Washington DC for breakfast and to prepare for meetings with representatives of the U.S. Congress. The team of which I was a part consisted of a total of four people and we had six appointments with senators. One of the […]
Genetic Alliance 2008 – Washington DC
Lex van der Heijden represented us at the annual meeting of the Genetic Alliance in Washington DC from 10 to 13 July. This meeting actually consists of several parts. The first day’s theme was “Genetics Day on the Hill” and had as its aim to meet as many senators as possible. In May of this […]
Genetic Alliance 2007 – Washington DC
On behalf of our association, Lex attended the annual Genetic Alliance conference in Washington DC (USA) from 26 July to 29 July. In addition, Lex met three new members/families. A part of the Gallis family came. They visited the Netherlands this year for a free medical examination (see in this newsletter under “story”). They drove to Lex’s […]
Genetic Alliance 2005 – Washington DC
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 : Share knowledge and experience with other patient organizations. Meet with other […]
