http://radoir.org/en/wp-content/uploads/2018/07/World-Rare-Diseases-2018-1.pdf

“I knew something was not right with my child. I could sense it from when he was very small,” explained Mauricio Saravia’s mother Marisa Damele.

Our son Oliver was struck down with Acute Necrotising Encephalopathy of Childhood (ANEC) this is a rare condition. On the 20th February 2016, Oliver was only three and a half years old. He was rushed into Accident and Emergency Department in Oxford because he had a seizure at home.

ECRD – the European Conference on Rare Diseases & Orphan Products was the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments, healthcare, social care, public health policies and support at European, national, regional and international levels.

Sean Hepburn Ferrer, the eldest son of the late actress and humanitarian, Audrey Hepburn, is Rare Disease Day 2018 Ambassador. Sean Hepburn Ferrer was the previous Rare Disease Day Ambassador for 2014, 2015, 2016 and 2017. We are honoured that he is raising awareness for us on an international platform once again.Sean contributes to elevating the voice of rare disease patients to an international level and is a symbol for all patient organisations familiar with the struggle of making their voice heard.

Update on the European Commission/EMA–FDA bilateral of 18-19 June 2018

Senior officials from the European Commission (EC), the European Medicines Agency (EMA) and the United States Food and Drug Administration (FDA) held their 2018 bilateral meeting in Brussels, Belgium, on 18 and 19 June. The two-day bilateral regulatory dialogue allowed the strategic partners to review their ongoing cooperative initiatives, discuss strategic priorities for the coming years and further strengthen the continuous close collaboration with specific action in the field of pharmaceuticals. The collaboration between EMA and FDA formally started in 2003 and has gone from strength to strength. The two agencies have daily interactions, most of them structured around working groups or ‘clusters’, with the aim to advance scientific and regulatory excellence worldwide.

October 2018

27th EURORDIS Round Table of Companies Workshop

16 October, Barcelona. “Patient engagement in the product life-cycle and community advisory boards (CAB)” More information.

December 2018

EURORDIS Council of National Alliances (CNA) meeting

10 – 11 December, Paris. For members of the CNA only. For more information please email anja.helm@eurordis.org.

EURORDIS Council of European Rare Disease Federations (CEF) meeting

11 – 12 December, Paris. For members of the CEF only. For more information please email anja.helm@eurordis.org.

February 2019

EURORDIS Black Pearl Awards

12 February, Brussels More information

March 2019

EURORDIS Winter School

11 – 14 March, Paris Applications will open here in the coming months.

 

On Sunday 24^th June, 2018, Dr. Seyed Mohammad Bathaie, the Minister of Education agreed: “We provide all facilities to promote school principal’s awareness through training courses on Rare Diseases via interactive networks.”

RADOIR News– During the meeting with Dr. Bathaie, the minister of education, he emphasized on raising students’ awareness about Rare Diseases. He also mentioned the weak points of the educational system in this regard: “Students must be trained how to behave and socialize with Rare Diseases Patients like EB. These patients should not be isolated from the society and left alone.

By Dr. Hamid Reza Edraki, RADOIR Managing Director

Vienna has always been the symbol of love and romanticism for me. How lucky I am, for the headquarters of Joint European Rare Diseases Society was located in the realm of music and timeless fine arts. The second reason for my happiness is the location of the European Radiology Association in the heart of Vienna. Eventually, the German language is another reason to remind me all the memories belonging to those days I was studying in Germany and Austria .

http://radoir.org/en/wp-content/uploads/2018/06/27th_ERTC_Workshop_Draft_Programme_online_version.pdf