|
We hope it is not too late to say Happy New Year! Welcome to the first newsletter of the year where we share the latest updates from VASCERN. From key advancements in rare vascular diseases to upcoming events you won’t want to miss, this newsletter keeps you informed and engaged in our community. Let’s dive in! |
| |
|
Webinar: Varicose Veins in Vascular EDS |
|
Join us on 6 February 2025 at 5:00 PM CET for an engaging and informative webinar led by Dr. Michael Frank, a cardiologist and specialist in vascular medicine.
This session will explore why varicose veins occur in vEDS, the symptoms to watch for, and the safest treatment options available. |
|
|
| |
 |
|
New Research Highlights Advances in Understanding and Managing Hereditary Haemorrhagic Telangiectasia (HHT) |
|
A newly published study titled “Hereditary haemorrhagic telangiectasia” provides a comprehensive look at this rare genetic vascular disorder. The paper delves into the underlying causes, key clinical features, and the latest advancements in treatment, offering hope for improved care and quality of life for individuals affected by this condition. |
|
|
| |
 |
|
RealiseD Project Launched to Transform Clinical Trials for Rare Diseases |
|
The Innovative Health Initiative (IHI) has launched the RealiseD project, a major partnership to transform how clinical trials are designed and conducted for rare and ultra-rare diseases. With €17 million in funding and nearly 40 public and private partners, the project will optimise clinical trial processes, improve access to innovative treatments, and ultimately enhance the lives of millions of people living with rare diseases across Europe and beyond. |
|
|
| |
 |
|
RDI Launches Youth Leadership Programme |
|
Rare Diseases International (RDI) has launched the RDI Youth Leadership Programme, an inspiring initiative aimed at empowering young leaders within the rare disease community. This global programme equips young individuals with essential skills, knowledge, and networks to create meaningful change for those living with rare diseases. Deadline to apply is 31 January, 2025. |
|
|
| |
 |
|
VASCERN welcomes young doctors as third representatives |
|
VASCERN is proud to announce an exciting new development: the integration of young doctors as third representatives in its healthcare provider centres. This initiative aims to ensure the sustainability of expertise in rare vascular diseases while fostering the next generation of specialists through hands-on experience and collaboration. |
|
|
| |
|
VASCERN VASCA Winter Meeting 2025 – 10th & 11th February, Berlin, Germany |
|
The VASCERN Vascular Anomalies (VASCA) Working Group will gather in Berlin for their annual winter meeting, bringing together experts and patient advocates to discuss key developments, new projects, and research in vascular anomalies.
Note: This meeting is exclusively for VASCERN members. |
|
|
| |
|
VASCERN Days 2025 |
|
Mark your calendars! VASCERN Days 2025 will take place on October 9–10, 2025, bringing together experts, patient advocates, and healthcare professionals from across Europe. Stay tuned for program details as we prepare to advance care for rare vascular diseases together. |
|
|
| |
|
Upcoming European & International Events |
| |
|
2nd edition of the International Conference on Vascular Anomalies (VAC 2025) |
|
Mark your calendars for the 2nd International Conference on Vascular Anomalies (VAC 2025), from February 11-14, 2025, in Berlin. Join experts, researchers, and clinicians to explore the latest advancements in vascular anomalies research and foster new treatment strategies. |
|
|
| |
|
Rare Disease Day 2025 |
|
Join the global movement on February 28, 2025, to raise awareness for the 300 million people living with rare diseases. Participate in #LightUpForRare, share your story, or organize an event to support equity in care and research. |
|
|
| |
|
RE(ACT) Congress & IRDiRC Conference 2025 |
|
The RE(ACT) Congress & IRDiRC Conference will take place on March 5-7, 2025, in Brussels, Belgium. This event brings together global experts to discuss rare disease research, data innovation, and advanced therapies. Abstract submissions close on December 31, 2024. |
|
|
| |
|
International Krupp Symposium on Juvenile Stroke |
|
Join the International Krupp Symposium on Juvenile Stroke on March 14-15, 2025, in Essen, Germany. The event will cover the causes, diagnosis, and treatment of juvenile stroke, with expert-led workshops and discussions. Admission is free, but registration is required by February 15, 2025. |
|
|
| |
|
2nd ERN ReCONNET International Congress on Rare Connective Tissue Diseases |
|
Join us at the 2nd ERN ReCONNET International Congress in Prague, April 9-11, 2025, focusing on rare connective tissue diseases. The event will cover key topics like diagnosis, clinical management, and quality of care, with a patient-centered approach. |
|
|
| |
|
European Human Genetics Conference 2025 |
|
From May 24-27, 2025, the European Human Genetics Conference will bring together experts, researchers, and students to share groundbreaking insights in human genetics. Participate in workshops, lectures, and networking sessions, either in-person or virtually. Abstract submission deadline January 30, 2025. |
|
|
| |
|
ESC Congress 2025 |
|
Join the largest cardiology event, ESC Congress 2025, from August 29 to September 1 in Madrid. Explore cutting-edge science, connect globally, and shape the future of cardiovascular care. Abstract submission deadline March 1, 2025. |
|
|
| |
|
Educational Resources: Back to the Basics Edition |
| |
|
This month, we’re going ‘Back to the Basics’ by highlighting key educational resources that explain the fundamentals of some of the rare vascular diseases covered in VASCERN. |
| |
|
An Overview of Hereditary Haemorrhagic Telangiectasia (HHT) |
|
This quick learning video introduces Hereditary Haemorrhagic Telangiectasia (HHT), explaining its main clinical features (and their frequency), as well as the genetics and aetiology of this rare disease.
Video in English with subtitles in French, Danish, Dutch, German, Italian and Spanish. |
|
|
| |
|
Marfan Syndrome – Diagnosis |
|
This quick learning video provides an introduction to Marfan syndrome and its diagnostic criteria, including the main clinical manifestations and genetic aspects of the disease.
Video in English with subtitles in French, Dutch, German, Hungarian, Italian and Spanish. |
|
|
| |
|
Vascular Ehlers-Danlos Syndrome (vEDS) – Introduction & New Criteria |
|
This quick learning video introduces vascular Ehlers-Danlos syndrome (vEDS) and presents the major and minor clinical criteria from the 2017 International Classification for all types of Ehlers-Danlos syndromes, published in the American Journal of Human Genetics. |
|
|
| |
|
An Overview of Paediatric and Primary Lymphoedema |
|
This quick learning video introduces the lymphatic system and provides a brief yet comprehensive summary of lymphoedema, including its diagnosis, treatment, and potential complications.
Video in English with subtitles in French, German, and Dutch. |
|
|
| |
|
The Lymphatic System & Lymphatic Malformations |
|
This quick learning video introduces the lymphatic system and lymphatic malformations, using clear, simple language to explain medical terms in a way that is accessible to patients and the general public. |
|
|
| |
|
VASCERN is now on Bluesky! |
|
Stay connected with us for the latest updates, expert insights, and community discussions on rare vascular diseases. Follow us on Bluesky: @vascern.bsky.social |
|
|
| |
|
Don't miss out on the latest discussions, achievements, and updates on our social media platforms. Follow VASCERN on social media to stay engaged with our vibrant community. |
| |
VASCERN, European Reference Network for Rare Multisystemic Vascular Diseases
46 Rue Henri Huchard, 75018 Paris, France
| |
|
