(Български) Проф. Виолета Йотова – лектор на XIIІ Национална конференция за редки болести и лекарства сираци
Institute for Rare Diseases’ 11-th EU project launched – BUR-EB: Changes in the Socio-economic Burden of Epidermolysis Bullosa in Europe
Epidermolysis Bullosa (EB) is a rare genetic skin disorder with no cure that places an enormous social and economic burden on patients and their families. Studies on this burden are scarce. The BUR-EB project aims to estimate the socio-economic burden of EB in 6 EU countries (Spain, France, Germany, Italy, Hungary and Bulgaria), and to compare it to data collected 10 years ago in the BURQOL-RD project.
Data related to the impact of EB on every-day life will be collected from affected persons and their caregivers via an anonymous survey in collaboration with clinicians and patient organizations (DEBRA). Based on the results, information materials will be developed to help patients and their families cope better with the illness.
BUR-EB offers an opportunity to observe how the social and economic impact of EB has changed over the last decade and how these changes could be related to the health and social policies implemented during that period.
More info you can find on the BUR-EB project website.
(Български) Доц. д-р Анна Попова – лектор на XIIІ Национална конференция за редки болести и лекарства сираци
(Български) Проф. Д-р Веселина Горанова-Маринова – лектор на XIIІ Национална конференция за редки болести и лекарства сираци
(Български) Акад. Драга Тончева – лектор на XIIІ Национална конференция за редки болести и лекарства сираци
April 17, 2022 is World Hemophilia Day. The theme of the event this year is “Access for All: Partnership. Policy. Progress. Engaging your government, integrating inherited bleeding disorders into national policy”. This important event is about bringing the global bleeding disorders community together. By raising awareness and bringing hemophilia and other inherited bleeding disorders to the attention of policymakers, we can increase sustainable and equitable access to care and treatment. The world continues to be affected by the COVID-19 pandemic and the conflict in Ukraine, but one thing hasn’t changed: we are still in this together, and we will always be stronger together as a community in our shared vision of “Treatment for All”.
“World Hemophilia Day is day for people who have been affected by a bleeding disorder—either because they have one, or because they care for someone who does. But we can’t forget that governments play a critical role. It’s important that they recognize bleeding disorders and assist people who have a condition in their countries.”
— Cesar Garrido, WFH President
About hemophilia and other bleeding disorders
In people with bleeding disorders, the blood clotting process doesn’t work properly, with the result that they can bleed for longer than normal, and some people may experience spontaneous bleeding into joints, muscles, or other parts of their bodies which can lead to developmental and permanent mobility issues. The overwhelming majority of people living with inherited bleeding disorders around the world still do not have access to diagnosis, treatment and care.
To learn more about World Hemophilia Day, please visit wfh.org/world-hemophilia-day.
The American College of Rheumatology (ACR) has established a new guideline for Rheumatologists treating Kawasaki Disease which is a rare inflammatory disease characterized by an acute febrile, systemic, self-limiting, medium-vessel vasculitis primarily affecting children.
Read the new guideline here.
On February 28 – the Rare Disease Day, prof. Stefanov will present a talk on “Rare Diseases – a Challenge to the Medicine”
28.02.2022, 18:00 hrs
Join trough Zoom: https://zoom.us/j/93549789437
Pass code : 93549789437