• Share4Rare webinar: “Paediatric palliative care in rare diseases”

    We are dedicating the next Share4Rare webinar to a topic of great interest to a large part of the community of people affected by a rare disease: palliative care. This type of care is a common
  • Amniocentesis test

    Amniocentesis is a procedure by which part of the amniotic fluid (the liquid contained within the amniotic sac) is removed for genetic testing during pregnancy. It is mainly used to detect anomalies
  • We speak with Gonzalo Bermejo, president of SYNGAP-1 Spain

    Gonzalo Bermejo’s daughter Carlota was diagnosed with SYNGAP-1 syndrome almost 4 years ago. She was 11 at the time. "The Spanish West Syndrome Foundation payed for our genetic test and the results
  • Share4Rare webinar: Medical imaging in rare disease diagnosis

    Medical imaging tests allow health professionals to obtain whole-body internal images or to visualize specific parts or organs. These tests are often used to find a diagnosis and to establish disease
  • Animal-assisted interventions: a great tool to accompany and treat paediatric patients

    This innovative tool was introduced in Sant Joan de Déu by Mª Josep Planas (HSJD Planning Director) and Núria Serrallonga (Child Life HSJD) through the CTAC (Canine-Assisted Therapy Centre), where Eva
  • 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
  • New Share4Rare study: Access to COVID-19 vaccination in people with rare diseases

    In 2020 we launched an international registry to study the effects of COVID-19 on people with rare diseases. At that time, there was little or no knowledge about the effects of the pandemic on the
  • 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
  • The story of Hafiz: father of a Duchenne adult in Sri Lanka

    I am Hafiz Issadeen, a parent from Sri Lanka. I had a son with Duchenne muscular dystrophy who died last year at the age of 37. I thought he must be the oldest patient in Asia at that time. I used to
  • The importance of educating patients and families about the science of rare diseases

    Science shapes our daily lives — see for example to what extent the COVID-19 pandemic outbreak has affected us and how science is continuously trying to solve this misfortune —, influencing many of
  • 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
  • Challenging endings, hopeful beginnings

    The last two years of the Covid pandemic have made everyone reflect on the flow of time, moreso those of us who are raising children with life-limiting and rare conditions. Time is precious to us