About Us
Search Results for: rare cancer
Total Results: 77
European Reference Networks
What are the European Reference Networks and why are they a priority for people living with a rare disease? Finding the right expert for a rare disease and accessing care remains a challenge for many of the 30 million people living with a rare disease in Europe. Often the only doctor who has expertise in […]
Social Policy Action Group (SPAG)
The Social Policy Action Group (SPAG) supports EURORDIS’ work to shape policies and practices that improve the access of people living with a rare disease and their families to holistic care, and the guarantee of their social and human rights. The SPAG is composed of 20 volunteers, representing 13 European countries and a diversity of […]
Lessons learnt: Building back better from COVID-19
Over the past year and a half, the COVID-19 pandemic has affected every household in the world, causing significant economic and social disruptions and challenging our approach to public health and social care. The rare disease community was particularly affected. People living with a rare disease have been caught in the collateral damage of the pandemic: essential treatment and care severely disrupted for 84% of people living with a rare disease in Europe. At the same time, 3 in 10 found these interruptions to be life-threatening. Everyone in our community has felt this extra vulnerability, this need for extra support, and, too often, this extra physical or mental suffering. Today, as the world is slowly learning to live with COVID-19, with the vaccine increasingly available across countries and regions, we ask ourselves: would we be where we are now without contributions from the rare disease community? And more importantly: where do we go from here? Rare disease research & best practices in addressing COVID-19
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".
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 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, […]