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March 01 2023

Making a Difference on Rare Disease Day

Making a Difference on Rare Disease Day

Rare Disease Day is an annual event celebrated around the world on the last day of February. It is a day for patients, families, and advocates to come together to raise awareness about rare diseases and the challenges faced by those living with them.

To mark this special occasion, VASCERN created a special video featuring a selection of patient advocates from the VASCERN European Patient Advocacy Group (ePAG) to highlight their motivations as patient advocates, the important role they play in the rare disease community and hope for the network. You can watch it here.

In addition, VASCERN patient advocates and members were involved in several activities at their national levels to commemorate the day. For example, Dr. Maryanne Caruana, a member of the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) made a presentation on HTAD and her role in the working at a seminar on Rare Diseases and European Reference Networks hosted under the distinguished Patronage of his Excellency President George Abela and organised by the Ministry of Health, office of the Chief Medical Officer in Malta. You can find the programme of the seminar here and the presentation from Dr. Caruana here. Our patient advocates with their patient associations were lighting up for rare, sharing their colors through their stories, and advocating for rare diseases in their national parliaments.

The European Joint Programme on Rare Diseases (EJP-RD) released a video on the Rare Diseases National Mirror Groups for Rare Disease Day.

VASCERN and its members are committed to bettering the lives of people living with rare vascular diseases and ensuring a brighter future for them. Every day, let us continue to raise awareness about rare diseases.

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