“Breathing Better to Live Better”: A Conversation with Mariano Pastor, President of Alfa-1 España, on Respiratory Physiotherapy, AATD, and the Value of Data
When you lack a protein that protects your lungs and liver, every breath counts. Alpha-1 antitrypsin deficiency (AATD) is a genetic condition that predisposes individuals to liver disease and early
A Share4Rare study analyzes the correlation between brain structure and the severity of Rett syndrome
People affected by Rett syndrome, primarily girls, have a severe disability that affects almost every aspect of life, from speech to the ability to walk, eat, and even breathe. This is often
Health emigration in rare diseases: what do we know?
In some countries, treatments for rare diseases are not available for the general population, so families often choose to emigrate to have access to adequate therapies. Unfortunately, there is very
Analysis of sleep disorders in SYNGAP-1 syndrome
Neurodevelopmental problems frequently come along sleep disorders. People with this type of brain damage often have trouble falling asleep or resting properly during sleep and may experience daytime
Health-related quality of life in rare diseases
Share4Rare is a growing community with thousands of users (patients, caregivers, and patient organisations) living with rare conditions. To study the impact and the burden of these diseases
New Share4Rare study on health-related quality of life in people living with rare diseases
The Share4Rare platform is growing day by day. Our safe space is taking in patients and families from all over the world to share knowledge and expertise and boost patient-centred research projects
Smart Tech: Improving the lives of millions living with a long-term disease
Chronic diseases present a significant challenge to the European Union, costing over €700 billion annually and affecting one third of all adults. Furthermore, each year over 4 million people pass away
Exercise in neuromuscular disorders: a moving topic
Nicole Voet is a rehabilitation physician and scientific researcher in the Rehabilitation Centre Groot Klimmendaal in Arnhem and in the academic medical hospital Radboud University Medical Centre in
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
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 15 th, Share4Rare launches two new research projects that will help improve scientific knowledge about
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