PRENOSIMO PRIGODNI BILTEN EURORDIS RARE DISEASES EUROPE – 25 GODINA POSTOJANJA

PRENOSIMO PRIGODNI BILTEN EURORDIS RARE DISEASES EUROPE - 25 GODINA POSTOJANJA

U donjem tekstu možete pročitati što je sve napravio EURORDIS u proteklih 25 godina. Klikom na “READ” otvorit će se naslovi brojnih tema kojima se bavi ova međunarodna organizacija. Možete pročitati i o nadolazećim događajima (na primjer, u rujnu u Beogradu bit će događaj koji organizira Nacionalni savez za rijetke bolesti Srbije pod nazivom: “Skrb za rijetke).

Izvo: EURORDIS RARE DISEASES EUROPE

The Voice of Rare Disease Patients in Europe

EURORDIS celebrates its 25th anniversary

On the occasion of the 25th anniversary of EURORDIS, we shine a light on the major achievements and successes over the past quarter-century. We’ve watched our community grow and become stronger than ever before, and so we would like to reflect together on why this work matters and how it should move forward.

Read more about our impact throughout the years, as well as our past achievements and milestones!

RARECONNECT

RareConnect, a patient-led initiative connecting rare disease patients globally, has just created a new online community! If you or someone you know are affected by COQ8A-ataxia (ARCA2), please refer them to this dedicated forum.

OPEN ACADEMY

How can competing interests be managed in a multi-stakeholder environment to make engagement in medicines development easier for all? Enrol on the new Open Academy e-learning course and learn more about conflict of interest, the impact they may have, and much more!

EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS

At the Closing Plenary session of the ECRD, Czech Deputy Health Minister Jakub Dvořáček outlined how his country would take over the topic of rare diseases as a crucial agenda during their EU presidency. Read more in our press release.

EURORDIS BLACK PEARL AWARDS

The Black Pearl Awards recognise the outstanding efforts of individuals, organisations, media, and companies who have contributed to improving the lives of people living with a rare disease. We encourage you to nominate your rare disease star, or enter yourself for the next Black Pearl Awards to give these achievements the celebration they deserve! Nominate now!

GET INVOLVED

Many of the millions of displaced Ukrainians have fled to Moldova and Romania to seek a safer environment. However, with limited resources, both countries face challenges meeting the complex needs of Ukrainians living with a rare disease. Read our country reports to find out more on the issues that remain and the urgent support needed.

WHAT’S NEW AT EURORDIS?

Something exciting has happened at EURORDIS! We are pleased to announce the long-anticipated arrival of our brand new website. In case you haven’t done so already, check it out now!

MEMBERS’ CORNER

Save the date! The “Caring for Rare” regional conference organised by the National Organisation for Rare Diseases of Serbia, will take place from 9 – 10 September 2022 in Belgrade! Check out their website for more information.

ORPHAN MEDICINES

9 medicines for approval, 4 orphan medicines

Podijeli

Zagreb, HR

12°C

slaba kiša

Hrvatska udruga leukemija i limfomi
predsjednik Dražen Vincek
Trg hrvatskih velikana 2/ll
10 000 Zagreb
OIB:51774844072
MB: 01136763
REG. BR.: 00000797
GSM: +385 (0)91 4873 561
TEL: +385 (0)1 4873 561
e-mail: udruga.hull.zagreb@gmail.com
Web adresa: www.hull.hr
IBAN: HR 36 2340 0091 1100 4711 4
SWIFT CODE: PBZGHR2X

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