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16 January 2020
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
03 January 2020
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,
18 December 2019
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
04 December 2019
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
18 November 2019
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
05 November 2019
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.
30 October 2019
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
Quality of life
21 October 2019
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.
18 October 2019
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
14 October 2019
Share4Rare. A platform as strong as its users
As you might already know, Share4Rare is a safe space where patients and carers can connect , share knowledge , and get involved in scientific research . It is a place where geographical, physical or
10 October 2019
The conceptualization of the Share4Rare brand
A few months after arriving at Òmada , general director Inma Chapí presented us a new project that we were going to address from the very beginning: an exchange platform for rare disease patients and
30 September 2019
We are looking for Share4Rare ambassadors!
Adult rare disease patients and their family members become experts in finding medical information, supporting research initiatives and leading patient organizations. For the most ultra-rare diseases,
Are you interested of being part of a community?