Eurordis 2010 – Krakow
We attended the Eurordis Conference in Krakow (Poland) from 13 to 15 May 2010. The President of Eurordis welcomed us and gave a presentation. This is the largest conference on rare diseases so far! The crisis in Europe has impacted organizations – there is in fact less being spent on public health. Grants are fewer […]
Eurordis 2008 – Copenhagen
Lex van der Heijden represented our organization at the annual Eurordis meeting. Each year this meeting is held in a different European country and this year it was the turn of Copenhagen, Denmark.The meeting was held on the 16th and 17th of May at a conference center, and was attended by approximately 140 people (in particular patients’ […]
Eurordis 2007 – Paris
We as an association are affiliated with several major international organizations such as Eurordis. This is a major international non-profit organization specifically representing the interests of Europeans with rare diseases. Eurordis has contacts at many levels, which opens doors for us that would otherwise remain closed. On 4 and 5 May 2007, Lex van der […]
Eurordis 2006 – Berlin
On 5 and 6 May Eurordis (the European non-profit organization for people with rare diseases in Europe) organized a conference in Berlin. Lex van der Heijden represented our association there. It appears that rare diseases are starting to receive more and more focus and attention in several countries. The wife of the German President Eva Köhler […]
Eurordis 2005 – Luxembourg
On 21 and 22 June 2005 a major international conference in the field of rare diseases was held in Luxembourg. The conference was organized by the European Organization for Rare Diseases (Eurordis) and various partners and supported by the European Commission, the Government of Luxembourg and the French organization against neuro-muscular diseases (AFM). On behalf […]
CORD 2019 – Toronto
The Canadian Organisation for Rare Diseases (CORD) organised a conference in Toronto from the 10th through the 12th of May, 2019. Lex participated in this conference on behalf of our organisation. Approximately 140 people were present from countries from all over the world. In addition, again meeting with the old acquaintances, new contacts were made, […]
NORD 2004 – Minneapolis
From 14 to 17 October, Lex van der Heijden attended a conference of the National Organization for Rare Disorders (NORD) conference in Minneapolis in the USA. The following is a report of this very intense, emotional and tiring journey.Approximately 180 participants – mainly from the USA – attended the conference. Of these, there were two from Europe and […]