Family Day 2023: Efteling
On Saturday, July 1, the participants gathered at the Efteling hotel around 9 am. A total of 86 people were present from Belgium, Germany, the Netherlands and Austria. The weather was cloudy and there was a little rain, but that didn’t spoil the fun! An advantage was that it was quite quiet in the morning […]
Blog Katie Allen August 2023
One tense moment for anyone with multiple doctors and specialists is when they disagree or need different things. One moment I recently went through was a change in regulation regarding referrals, where my specialist was now required to get a referral more often than my family doctor thought necessary. It led to tense appointments with […]
Agenda and registration worldwide member conference Netherlands 2023
On Friday evening, October 27, our worldwide membership conference will start again in the Netherlands! Saturday 28 October we have a very varied program for all ages including dinner. On Sunday 29 October we will also go further and close our members conference after lunch. At the request of our members, we offer sessions in […]
Data allowed on servers in the USA
The European Union and the USA have reached an agreement on the exchange of data belonging to European citizens. This means that companies are once again allowed to save our data on American servers. One of the new amendments is that American intelligence agencies cannot unjustifiably access personal data from the EU. Furthermore, an agency […]
Blog Katie Allen July 2023
This month’s blog is a bit more stream-of-consciousness than usual and I apologize, but it felt like something I needed to say and this was an appropriate place to work through some emotions. Likewise, this month’s picture is of a favourite walk of mine that I go to clear my head. I found out today […]
Slovakia – Magdaléna Kohutová
My name is Magdaléna Kohutová and I live in Košice, the second largest city in Slovakia. I work as an IFRS specialist in the finance department of a company that owns a chain of hospitals and outpatient clinics in Slovakia. In my spare time I enjoy jogging, walking and spending time with my family and […]
Global Skin Foundation 2023 – Brussels
From June 1-4, 2023, GlobalSkin hosted ELEVATE 2023, a conference exclusively designed for dermatology patient organization leaders. The event, which took place at the Crowne Plaza in Brussels, Belgium, welcomed 200 participants. This diverse group comprised 142 patient leaders from 124 organizations spanning across 53 countries, as well as speakers, sponsors, and stakeholders. Over the […]
Dr. Paolo Gasparella (Austria) – Medical advisor
Dr. Paolo Gasparella is a Consultant Pediatric and Adolescent Surgeon at the Department of Pediatric and Adolescent Surgery of the Medical University of Graz (Austria). He qualified as a specialist pediatric surgeon in 2011 at the University of Padova (Italy). In the University of Padova he also obtained his PhD in Developmental Medicine and Health […]
Blog Katie Allen June 2023
Summer fun on vacation is just one of those childhood memories that glows the brightest. However, when you have a rare disease, there are a few handy tips for making it all fun in the sun. The first lesson I learned was to have extra medications, whether it’s cancelled flights or wildfire season in Canada, […]
Eurordis 2023 – Stockholm
Finally, Eurordis was able to organize a ‘real’ in person members conference. The last time this took place was in 2019 before the Corona pandemic. From May 25 to 27, 2023 250 people from all over Europe gathered in Stockholm, Sweden. 25th of May On the 25th of May there were 2 parallel sessions held: […]