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28th February: Rare Disease Day 2017 is here!

January 31, 2017

As every year, this 28th February Rare Disease Day will be held around the world with the aim of raising global awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The Rare Disease Day 2017 theme is research and the slogan is “With research, possibilities are limitless”. Get involved with Rare Disease Day 2017!

e-ENERCA Final Public Report is available!

November 26, 2016

 e-ENERCA has come to an end reaching its main goal, to provide professionals and patients with e-Health tools to assure the same level of RA services across Europe, independently from the country of practise and the origin of the patient. e-ENERCA also aimed to promote the recognition of Centres of expertise by the national health authorities necessary for its promotion and its recognition as a European Reference Network (ERN) on RAand to assess the implementation of the new Directive 2011/24/EU. Although it has not been easy the three platforms foreseen for eRegistry, Telemedicine and eLearning have been developed and implemented in ENERCA website. If you want to know more download the e-ENERCA Final report!

New collaboration among EU and US to boost medicine development on Rare Diseases

November 7, 2016

The creation of this cluster is the latest step in EMA’s and FDA’s wider objective to expand and reinforce international collaboration. The currently existing EMA/FDA clusters discuss issues related to patient engagement, biosimilars, orphan medicines, medicines to treat cancer, medicines for children, and pharmacovigilance, among other topics.

Know about Little Bernat!

October 3, 2016

Bernat is a young boy who suffers from a grave case of the rare hemolytic disease known as Pyruvate Kinase Deficiency. Little Bernat has a wonderful website to inform people about PK Deficiency and to raise global awareness about the little things that people can do to help children like Bernat.

First Rare Barometer Voices survey on the impact of rare diseases on daily life

September 15, 2016

EURORDIS has developed the Rare Barometer Voices, a new interactive survey panel available in 23 languages that collects the experiences of people that are living with or affected by a rare disease. The first stage of the study is now open!

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Agenda

EURORDIS Awards & Black Pearl Evening 2017

February 21, 2017

Brussels, Belgium

EURORDIS-Rare Diseases Europe is delighted to announce its 20th anniversary and the sixth edition of the EURORDIS Awards & Black Pearl Evening.This important fundraising event for the rare disease community will take place on 21 February 2017 at the Hotel Le Plaza in Brussels, Belgium.Every year this event brings together over 200 people from across the world, including public officials, patient advocates, clinicians, biotech and pharmaceutical executives, rare disease researchers, media, celebrities and philanthropists.

EURORDIS Rare Diseases Europe

EURORDIS 2nd Multi-stakeholder Symposium on Improving Patient Access to Rare Disease Therapies

February 22-23, 2017

Brussels, Belgium

The goal of this second symposium is to develop a cooperative process for reaching mutually acceptable solutions that respect all stakeholders, that enhance and sustain trust, and that build mutual understanding of each other’s perspectives and expectations. The symposium aims to: Recognise stakeholder issues on assessing new treatments, providing patient access, and ensuring affordable and sustainable healthcare; Elicit the important interests of each stakeholder group; Identify current and emerging initiatives and, through them, investigate together reasonable, innovative ways to work collaboratively across stakeholder groups to resolve rare disease patient access issues in an equitable way for each stakeholder and for society as a whole; Pave the way to a fair, inclusive and on-going multi-stakeholder approach with the potential to generate sustainable, affordable and actionable improvements in patient access to rare disease therapies  

EURORDIS Rare Diseases Europe

British Society for Haematology Annual Scientific Meeting

March 27-29, 2017

Brighton, UK

It promises to cater to all Haematology specialists with an excellent scientific and educational programme in place covering the latest research and best practice. The three main days will be packed with more than 36 sessions and will open with a joint BSH/ASH session and close with a summary of key information from the meeting in the take-home messages. In between will be 27 educational sessions, 3 plenary lectures and 12 satellite symposia as well as free communication and 'meet the expert' sessions.

British Society for Haematology

21st ESH – EBMT Training Course on Haemopoietic stem cell transplantation

May 4-6, 2017

Dublin, Ireland

The objective of the course is to give opportunity to the attendees to have close contact and lively interaction with the teachers and the group in a nice setting. All slides will be available onsite. The speakers are chosen not only for their expertise in their subject but also for their teaching skills and willingness to discuss the field of transplant in both formal and informal settings. The course is suitable for physicians at all stages of their career and is particularly useful for those in training, for those who wish to develop their current practice to a more challenging type of transplant and also as an update for established transplanters. The program will include: • Plenary sessions • Clinical cases • Poster presentation • Breakfast meet the expert sessions • Meet the expert dinner

European School of Hematology and European Society for Blood and Marrow Transplantation.

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