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WORLD HEMOPHILIA DAY 2021

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EAHAD Webinar: WGBD Principles of Care

EHC introduces new educational app on rare bleeding disorders & novel therapies


WE ARE CHANGING HEMOPHILIA. TOGETHER. LET EVERY VOICE BE HEARD!


SLOVENIA AND WORLD HEMOPHILIA WEEK 2020


Hemophilia and allied bleeding disorders belong to the group of rare diseases. The general public and individuals who encounter such disorders are often insufficiently informed. It is important that information is available to all. Quick access is of vital importance, particularly in this modern age. What is also crucial here, is the awareness of hemophiliacs, people with Von Willebrand disease,and people with other deficiencies in clotting factors, such as F II, V, VII, X, XI, XII, XIII, regarding all
the possibilities of controlling and dealing with their disease. 

Every individual suffering from any of the above stated diseases wishes to retain quality of life and
thus needs appropriate guidelines and information on new treatments, different possibilities of treatment, and contact with their fellow comrades-in-arms, their life stories and experience, because this enables them to make appropriate decisions for themselves.

TAKE PART, CO-CREATE AND STAY INFORMED


The blog you are reading, called HaemophAmicus, is created with the intent of raising awareness and informing individuals - the above stated people with blood-clotting disorders, health care professionals, medical, recreational, school and sports workers, the Ministry of Health of the Republic of Slovenia, health institutions and agencies, pharmaceutical profession and other interested parties. HaemophAmicus will also shed light on developments in the Slovene and global hemophilic
community, because we find it important to give all stakeholders of goodwill an opportunity to express their opinion, make suggestions and present new ideas. 

In this way we hope to build a trustworthy community of hemophiliacs and people with allied blood disorders.

You are all kindly invited to contribute and co-create HaemophAmicus!

e-mail: info@haemophamicus.eu