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
Free access to this year’s ASCO for patients - Register now!
The annual congress of ASCO (American Society for Clinical Oncology) is the world’s largest oncology meeting. Last year over 30,000 people attended! ASCO is one of the congresses where the very latest
María Cecilia Foundation: improving the lives of families affected by childhood cancer
The María Cecilia Foundation was established in 1991 by a group of parents of children diagnosed with cancer. Through their experiences, they envisioned to give life to an organization that could help
A patient story — "How my daughter was diagnosed with in situ melanoma"
Irina, thank you for telling us about your daughter’s story. If I am to talk about what happened to us, I could tell you that we have taken our daughter to a private clinic rather by chance, not
Meeting the partners — Melanoma Patient Network Europe
Melanoma is a cancer starting in the pigment-producing cells of our body called melanocytes. The most common form of melanoma is skin melanoma. However, in rare cases, melanoma can also start in the
Natalí Dafne Flexer Foundation: helping children with cancer in Argentina for 25 years
Natalí developed cancer and died one year and three months after starting treatment, in July 1995. In her memory, her mother Edith created the Natalí Dafne Flexer Foundation (FNDF) to help children
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
Patient organizations can now register in Share4Rare!
In a global world in which relationships are built, grown and consolidated in digital environments, the active presence of patient organizations is key. In order to tackle this need, detected through
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
Aleksandra talks about her experience of caring for her children with rare neuromuscular diseases
Aleksandra has two children affected by a rare neuromuscular disease. Her son has a diagnosis of limb-girdle muscular dystrophy type 2D (LGMD2D) and her daughter has a diagnosis of collagen VI