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Rare disease day 2023

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.

The event is supported by all organizations for rare diseases 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. This project is supported by the Swiss agency 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 on: https://www.depolarizirajse.org/

 


Balkan regional meeting of Gaucher associations

Dear members and supporters,

From 5th to 7th of April, in Sarajevo, Bosnia and Herzegovina, there will be a Gaucher meeting organized by the Balkan Associations from Slovenia, Macedonia, Bosnia and Herzegovina and Serbia.

The goal of the meeting is for patients, parents, doctors and nurses to talk together about life with Gaucher and how to improve quality of life in the future.

At the same time, this is a first meeting of patients with lysosomal diseases at Balkan region level.

The interactive program is on the following subjects:
– Mutual understanding and support

– Exchange of opinions and experience

– Questions and discussion about life with Gaucher

The meeting will be in hotel Europa in the center of Sarajevo and as official language we chose Serbian-Croatian with a goal to understand each other easier and better and to establish and maintain contact with each other.

This meeting is organized from the following patient organizations:
Association of patients for rare diseases from Bosnia and Herzegovina  – http://www.rijetkebolesti.ba
Association of citizens for rare diseases “Life With Challenges” – R. Macedonia– http://challenges.think.mk/
Association of citizens for help of patients with Gaucher  Serbia  – http://www.gose-srbija.rs
Association of patients with Gaucher – Slovenia  – www.gaucher-drustvo.si

Logistic and financial support for organization of the patient meeting is provided by:
Genzyme (Sanofi Company)
Association XY – www.xy.com.ba/bih

Sincerely,
Vesna Aleksovska
President of Association of citizens for rare diseases “Life With Challenges”


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