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 19 th to 21 st , 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
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.
Share4Rare Pilot for Rare Neuromuscular Diseases
We are pleased to announce that we will soon be ready to start the research projects on the S4R platform. The ‘My Studies’ area will provide an opportunity for researchers to submit surveys to the S4R
How do you comfort a child with a rare disease?
Psychologically speaking, the relief from a chronic pain is more than necessary in order to help the patient carry on with this very difficult condition. In regards with a child with a rare disease ,
A disease with no name: Edu’s story
Sandra is Edu 's mom, a 5-year-old boy who suffers from a rare disease. When Edu was born he could not open his eyelids , but doctors did not find that a reason for not discharging him from hospital.
Share4Rare principles for co-creation with patients
The clue is in the title. Patient engagement (PE) cannot happen without patients , and so it is clear that any materials, initiatives, or projects linked to patient engagement can also not happen