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ISSVA 2023 – Boston

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. The ISSVA organised a worldwide conference in Boston (USA) from 19 to 21 April. There were 279 participants physically present and 263 participants joined ‘online’. The title of the conference […]

VAC 2023 – Brussels

Organised by the DeDuve Institute in Brussels, Belgium, the Vascular Anomalies Conference took place from the 31st of January to the 3rd of February. One of the directors of the Institute is Prof. Dr. Miikka, Vikkula, who is also one of our advisors. There were around 220 people from around 15 countries present, including, among […]

CORD 2023 – rare disease day 2023

CORD

Overall, the tone of this meeting was very positive. One of the major discussions of last November’s meeting was about when the Canadian Federal Government was going to announce the Rare Disease Strategy they had been promising since 2019. A week before this conference the beginning stages of a Rare Disease Drug Strategy was announced […]

Rare Diseases Day Netherlands 2023

On Tuesday, February 28, 2023, the Rare Angel Awards were presented in Amsterdam to three award winners because of their special significance for people with rare disorders. The Awards have been presented annually since 2009. Rare Angel in the category ‘patient or loved one’ is Marjolein van Kessel because of her tremendous effort for patients […]

CORD 2022 – Toronto

The Canadian Organization for Rare Diseases (CORD) hosted the Rare Disease 2022 Fall Conference in Toronto on November 21-22, 2022. Katie Allen (online) and Anna Janzen (physical) participated in this conference on behalf of our organization. Below are a number of short reports from various speakers. Summary Overall, it was an informative and goal-oriented conference. […]

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 […]

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