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EURORDIS Awards 2016 – winners announced!
The EURORDIS Awards 2016 were presented this week at a ceremony in Brussels. The Awards recognise outstanding patient advocates and organisations, volunteers, scientists, companies, media and policy makers who have contributed to reducing the impact of rare diseases on people's lives. Yann Le Cam, Chief Executive Officer, EURORDIS, commented, "The winners of the EURORDIS Awards show exceptional commitment to supporting people affected by, or people that are living with someone affected by, a rare disease. It is an important opportunity every year to take stock and recognise the hard work of the various individuals and organisations that help reduce the impact of rare diseases, and encourage others to do the same." A video of the awards ceremony will soon be available to watch on the EURORDIS events channel of EURORDIS TV. Photos of the award winners are available here. Below gives a shortened summary of each award winner. For full descriptions please see the full press release.
Patient Influence on Decision Making Creates Win-Win Situation
This year's Rare Disease Day EURORDIS Policy Event in Brussels was an unprecedented success with over 150 participants. Speakers at the 'Rare but Real: Talking Rare Diseases' event - including patients, EU Commissioner for Health Vytenis Andriukaitis and Belgian Member of the European Parliament Philippe De Backer - discussed how patients' influence on decision making results in a positive impact on rare disease policies. The event's new discussion format included four talks, each of which presented successful examples of interactions between patients and various stakeholders. The event was also open to participants across the world via a live stream video shown on the EURORDIS website (now available on EURORDIS TV). Viewers from over 30 countries tuned in to watch live. Commissioner Andriukaitis opened the event by saying, "I believe European action can make a difference in improving the lives of people with rare diseases; people who struggle to find the rare expertise to diagnose and treat their disease. I am committed to working with EURORDIS and all stakeholders to maximise our work towards delivering European solutions to address rare diseases".
EURORDIS Wins Call for Tender to Develop ERN Manual & Toolbox
The Partnership for Assessment of Clinical Excellence in European Reference Network (PACE-ERN) Consortium, with EURORDIS as its lead, has won an EU Commission call for tender to develop a European Reference Network (ERN) manual and toolbox. The PACE-ERN Consortium will develop a technical proposal for the manual and toolbox in the coming months. The manual will include operational criteria to be used in the assessment of all applications from networks of healthcare providers and centres of expertise wanting to become ERNs. The toolbox will provide guidelines for network applicants and independent assessment bodies to facilitate the application process. Background information: Read our recent eNews article What is a European Reference Network? or the EU Commission ERN webpage. ERNs create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of healthcare providers that are organised across borders. Due to the low prevalence and complexity of rare diseases, the nature of small and scattered patient populations, as well as the scarcity of expertise, the system of ERNs can bring real added value to rare disease patients; ERNs aim to provide healthcare professionals with access to expertise that they may not be able to access in their country.
Living with ocular prosthesis, but without velvet gloves: Retinoblastoma
Retinoblastoma. Only one word. One word that few people know or have ever heard. Yet it causes apprehension. Sounds ominous. And people who learn about it for the first time in their lives from a doctor will probably never forget that moment. The parents of the today 5 years old Julia Fischer in Rhineland, Germany, […]
5th EURORDIS Summer School for Patient Advocates
This year in the heat of the June sun in Barcelona, patients' representatives gathered once again to learn about clinical trials, drug development and the regulatory processes in Europe in the context of the EURORDIS Summer School.
Noonan Syndrome Angels: An Italian patient organisation is fighting for them
LIVING WITH A RARE DISEASE Six months after her birth in July 2005, Margherita was diagnosed with Noonan Syndrome, a genetic disorder that prevents normal development in various parts of the body. Even though her mother, Antonella Esposito, a psychotherapist, knew nothing about rare diseases, let alone Noonan syndrome, she knew something was wrong. “Maybe […]
Fibrodysplasia Ossificans Progressiva (FOP)
LIVING WITH A RARE DISEASE Â Fibrodysplasia Ossificans Progressiva (FOP) Manuel and his family live in Argentina. He was only 4 years old when he was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), an extremely rare genetic condition that affects 1 in 2 million people. FOP is a disorder in which bone is formed in muscles, […]