This year International Gaucher Day was marked with a focus on diagnosis. We are sharing stories from all over the world and the video on diagnosis.
https://gaucheralliance.org/international-gaucher-day/
This year International Gaucher Day was marked with a focus on diagnosis. We are sharing stories from all over the world and the video on diagnosis.
https://gaucheralliance.org/international-gaucher-day/
Dear supporters and members,
Rare disease day 2023 will be held on the 28th of February at Mala Stanica, Nacionalna Galerija, at 11.00 h. We will have an exhibition, peaches from relevant stakeholders, and a discussion about the problems and challenges of people with rare diseases.
The event is supported by all organizations under the National Alliance for rare diseases of the Republic of North Macedonia. Together we will all mark this day by talking about the problems and challenges of our everyday life.
We expect the exhibition to be opened by the First Lady of the Republic of North Macedonia. Invited guests and speakers are institution representatives (Minister of Health, Minister of labor and social rights, Health Insurance Fund, Institute for genetics, Commision for rare diseases), doctors, patients, families, media representatives, etc.
Additionally, we are working on a project: through depolarization to democratic, stable, and inclusive institutions. The Swiss agency supports this project for development and cooperation in the frames of the program of Civica Mobilitas, and it is led by ISSHS, with several partner organizations. The main goal is critical and informed dialog, monitoring, analysis, and advocacy toward policies that will strengthen the executive government’s capacities for building democratic and inclusive institutions. Read more about the project at: https://www.depolarizirajse.org/