• 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
  • A world of sensations: Bruna’s story

    Bruna is 12 years old and is affected by an ultra-rare genetic syndrome that causes severe refractory epilepsy, cognitive and motor retardation — she is not able to speak or walk — and severe visual
  • Asia, Latin America and Europe unite and acknowledge the need for a global strategy in the field of rare diseases

    On October 19th to 21st, the APARDO summit joined together patient advocates from 17 countries around the world, and its goal was to share all the current worldwide rare disease scenarios and to move
  • Looking for patients with 6q25 deletion syndrome: Mia Regina's story

    Mia Regina is a 6-year-old girl born in Mexico DF with a rare genetic pathology: the 6q25 deletion syndrome. This syndrome was described approximately a decade ago and is characterized by — among
  • The research project for paediatric gliomatosis cerebri is already here!

    Some time ago we met Mónica, Izas's mum and president of the Spanish association of gliomatosis cerebri "Izas, la princesa guisante". Her story is an example of courage, struggle and dedication. This