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 […]
Eurordis 2019 – Bucharest
The European organisation for rare diseases Eurordis organised a members conference in Bucharest (Romania) from 16 to 19 May. On behalf of the CMTC-OVM organisation, the chairman Lex van der Heijden participated in this conference. Around 270 people attended this conference. First day The first day was meant to bring together European Patient Advocates Groups […]
Eurordis 2018 – Vienna
From 10 to 12 May 2018, the European Organization for Rare Diseases Eurordis (www.eurordis.org) organized a global conference with the theme ‘collaborative strategies to leave no one behind. This year was the conference in Vienna. More than 900 people from 58 countries were present and 120 speakers. In addition, there were many poster sessions that […]
Eurordis 2017 – Budapest
The European Organization for rare diseases, Eurordis, has achieved a great deal in the past 20 years. This became evident during the annual conference in Budapest, Hungary on 19th and 20th May. Especially the start of European Reference Networks has been an important step forward in improving access to diagnosis and treatment of rare diseases. […]
Eurordis 2016 – Edinburgh
The European Organization for rare diseases Eurordis held its annual conference this year in Edinburgh, Scotland on May 26-28. This year not only members were invited, but also all sorts of other organizations and companies. The total number of participants this year was around 750! On behalf of the CMTC-OVM organization, Lex van der Heijden […]
Eurordis 2014 – Berlin
From May 8-10, 2014, we participated in the global Eurordis meeting for members and this year there were also various (pharmaceutical) companies represented.This year the meeting took place at Hotel Andel in Berlin, Germany. More than 800 people from all over the world were present (including Peru and Australia)! On a large world map, the […]
Eurordis 2013 – Dubrovnic
From May 30 to June 1, 2013 Eurordis was a gathering spot for members. This meeting took place this year at Hotel Rixos, Dubrovnik, Croatia.The meeting this year had a lot of emphasis on national plans and strategies of the various European countries in the field of rare diseases and how they should be implemented. […]
Eurordis 2012 – Brussels
From Wednesday, May 23 to Friday, May 25, 2012, we attended the annual Eurordis conference. Eurordis is the European umbrella organization for all patient organizations and other players in the field of rare diseases. The conferences are useful for networking with other patient organizations as well as doctors and increasingly the pharmaceutical industry. During the […]
Eurordis 2011 – Amsterdam
From 12 to 14 May 2011 was Casa400 hotel in Amsterdam’s annual meeting organized Eurordis. This we have as an organization again attended. Thursday, May 12 Dutch patient organizations came together. Some of the organizations have a presentation. There was also the possibility to follow a workshop on online communities. During the day ever came […]
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 […]