First Consensus Meeting of the Melanoma Patient Network Europe: What does a uveal melanoma guideline have to cover?
First, what actually is uveal melanoma? ‘Uveal melanoma is a cancer that starts in the pigment-producing cells of the eye. It is one of the rare forms of melanoma as it only affects about 6 people out
The psychosocial impact of long-term caregiving in rare neuromuscular conditions
There are so many advantages to getting a clearer picture of how your time and energy is spent. It can help you and others learn new things, and assist in making informed decisions about how to spend
Next stop: improving the quality of life in children with leukemia
In 1975 Professor Giulio J. D’Angio published an article entitled “Childhood cancer in perspective. Healing is not enough”. The author imagined childhood cancer at the end of a long tunnel: looking
The rebellion of the leukocytes: Íngrid’s story
One day, in the summer of 2018, Íngrid felt an unusual pain in the elbow and she noticed it was swelling. The traumatologist concluded that it was due to a simple tendonitis probably caused by the
Research projects on rare paediatric tumors and acute lymphoblastic leukemia are about to start!
On the occasion of International Childhood Cancer Day, which is commemorated annually on February 15th, Share4Rare launches two new research projects that will help improve scientific knowledge about
When the sun is your enemy: Pol’s story
When Pol was only two months old, the first sunburn appeared on his face. Shortly after, similar injuries began to show, major burns in those areas of his body that were not protected by clothing
New Share4Rare research project for children with acute lymphoblastic leukemia!
Acute lymphoblastic leukaemia (ALL) is the most common type of cancer in childhood, but due to the treatments currently available, the overall survival of children with this disease is now 85%
Share4Rare’s most frequently asked questions
Over the last year, Share4Rare has gone from being merely an idea to being home for over 1,000 users pushing together against rare diseases. And we expect this to be only the beginning: with the first
Objective: increasing survival rates for children with cancer
More than 400,000 children and young people are expected to develop cancer every year. However, not all of them have the same chance to survive. In high-income countries (HICs), five-year survival
The role of social media on health communication
In the time since they first emerged in the early 2000s, social media have truly become the norm. Today they are widely used by individuals and businesses to communicate and stay connected; indeed
In rare diseases unity is strength
Behind every rare disease, every symptom, every diagnosis — when you are "lucky" to have one — there are personal stories that have many things in common: lack of specific health policies, lack of
A carer for family members with myotonic dystrophy talks about the challenges of diagnosis and living with this rare disease
Nicky is a carer for six family members across three generations who have a diagnosis of myotonic dystrophy. Like many families, they had been living with the wide range of symptoms associated with