New webinar — Patient advocates fostering research in oncology: the Share4Rare experience
One of the pillars of Share4Rare is to enhance collaborative research. For that purpose, at the end of 2019 the platform started piloting four research projects concerning several groups of rare
Virtual coffee with patient organisations and Share4Rare: 'Advancing a Patient-Centric Research Agenda'
Research is at the heart of solutions for all patients. However, it is not always conducted with the patient in mind. Patient organisations are increasingly invited to submit evidence to healthcare
Why is understanding the natural history of a disease so important?
We are currently in the middle of a global pandemic caused by the new SARS-CoV-2 coronavirus, which causes a disease (COVID-19) that was completely unknown a few months ago, even to the medical and
Share4Rare Webinar: ‘FAIRness of Data in Rare Diseases’
Rare disease patients tend to be more in favour of sharing health related data than the general population. A recent study from EURORDIS’ Rare Barometer survey shows that 97% of rare disease patients
How online education can help children with rare diseases
The number of European Union citizens living with rare diseases is estimated to be around 30 million, according to Eurordis Rare Diseases Europe. In fact, 1 in 17 people will be affected by a rare
Receiving a cancer diagnosis is always bad. But receiving a rare cancer diagnosis adds to the challenge.
Ocular melanoma is a rare form of melanoma and starts in the pigment-producing cells of the eye. About 6 out of a million people will be diagnosed with ocular melanoma every year, the large majority
Gathering people’s knowledge on cell and gene therapy to create tailored educational materials for patients and citizens
Being educated on health sciences can bring you numerous benefits as a regular citizen, especially if your are a patient or a caregiver: this way you will be more empowered on and will be able to
FEDER Rare Disease Information and Orientation Service (SIO): building bridges to improve the lives of the patients
For two decades, the Spanish Federation of Rare Diseases (FEDER) has been giving voice to more than 3 million people who live with a rare pathology in Spain. At the present time, the association
Share4Rare Webinar VIII: ‘State of the Art of Rare Disease Activities in Europe’
The Resource on the ‘State of the Art of Rare Disease activities in Europe’ is a well-established resource providing valuable, detailed information for all stakeholders in the field of rare diseases
The science corner: the immune system fighting cancer
A recent paper published in Nature Immunology has raised a lot of enthusiasm amongst scientists and patients. Its remarkable finding was a cancer receptor that enabled a new group of T cells to
Coronavirus and rare diseases — How can we reduce transmission and cope with a rare disease during these days?
The new coronavirus outbreak is affecting people all across the planet, but there are communities who are especially vulnerable to this situation. We have learned that people over 60 — and this is
Share4Rare webinar VII: ‘Online Advocacy – Social Media & Valuable Tools’
Learnings In this webinar, Bettina Ryll, Gilliosa Spurrier-Bernard and Violeta Astratinei from the Melanoma Patient Network Europe will share learnings and best practices from their work in patient