NORD 2022 – Washington DC
On October 17 and 18, 2022, the US National Organization for Rare Disorders (NORD®) hosted the Conference on Rare Diseases and Orphan Drugs. More than 830 enthusiastic attendees from around the world gathered to address and take action on the opportunities and challenges facing the rare disease community.Items on the agenda included accelerated approval, newborn […]
EADV 2022 – Milan
Van 7 tot en met 10 september 2022 werd in Milaan weer European Academy of Dermatology and Venereology (EADV) georganiseerd. Het aantal deelnemers was 14.000 uit meer dan 120 landen over de hele wereld en 600+ sprekers in 170 verschillende sessies. Stand Onze organisatie had samen met Naevus Global een stand tijdens deze conferentie. Wij […]
Eurordis 2021 – online
The annual conference of Eurordis (European Organization for Rare Diseases) this year was only an online member meeting and not a conference. As a result, there is no report.
Eurordis 2022 – online
The European Conference on Rare Diseases and Orphan Products is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning, and conversation take place, forming the groundwork to shape future rare disease policies. The 11th edition of the European Conference on Rare Diseases & Orphan Products (ECRD) was a virtual event […]
WCRSD 2022 – Paris
The first Global Congress on Rare Skin Diseases (WCRSD) was held in Paris from 7 to 9 June 2022. The main aim was to bring together medical teams, scientists, patient representatives, policymakers and industrial teams. The goal was to encourage collaboration between specialists from different areas and countries and to encourage more research and clinical […]
ISSVA 2022 – Vancouver
The ISSVA (International Society for the Study of Vascular Anomalies) is a multidisciplinary international organization of doctors, scientists and healthcare providers united by an interest in vascular anomalies. Once every 2 years, the ISSVA organizes a worldwide conference. For 2022 the conference was held in Vancouver (Canada) from May 10-13. We were able to combine […]
VASCA Workgroup Conference spring 2022 – Brussels
On the 6th of April 2022, the annual Spring Meeting of the VASCA work group (a division of ERN VASCERN) was organised in Brussels. VASCERN is one of the European Reference Networks (ERNs) in the field of rare multisystemic vascular diseases. We as an organisation are affiliated with the ERNs VASCERN and SKIN. All care […]
Rare Diseases Day Netherlands 2022
Traditionally, Rare Disease Day is organized worldwide on the last day of February. We have also been doing this for years. We have also developed material ourselves and we also make it available to our Patient Advocates so that they can make their own version for their country. Former Royal Palace Soestdijk Our organization is […]
VASCERN Conference 2021 – Paris
From September 7 to 9, 2021, the annual VASCERN congress was organized in Paris. VASCERN is one of the European Reference Networks (ERNs) in the field of rare multi-systemic vascular diseases. We as an organization are affiliated with both the ERN VASCERN and SKIN. All healthcare providers are part of recognized reference/excellence centers in their […]
Rare diseases day Netherlands 2021
We have been actively participating in the global rare diseases day for years. Unfortunately, in 2021, due to the COVID-19 virus a ‘real’ day can’t be organised, but the rare diseases day will become a virtual day in 2021. Rare Disease Day takes place on the last day of February each year. The main objective of Rare […]