“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
Neuromuscular diseases: understanding, adapting and building community
What are neuromuscular diseases? Neuromuscular diseases (NMDs) are a group of more than 150 conditions that can affect the nerves that control muscles, the muscles themselves, or the communication
Mental health in rare diseases: when caring is as important as treating
When we talk about rare diseases, we often think of complex diagnoses or, in some cases, the lack of it; innovative treatments, or very few treatments; long waits for answers, and a lack of support
Secure data enables collaborative research through patients’ registries
Living with a rare disease is a path full of challenges. But what if we told you that patient data, shared securely and ethically, can be a powerful tool to advance research and improve the lives of
How does your organization investigate?
At S hare4Rare, we want to know firsthand about the real research needs of patient organizations in the field of rare diseases . The first notebook will focus on analyzing the experience of the
New study on Share4Rare: Barefoot-style shoes for children with Epidermolysis bullosa simplex
Epidermolysis bullosa (EB) is a group of rare genetic disorders characterised by extreme skin fragility and mucous membranes, leading to blisters and wounds. It is present from birth and currently has
Selection of research projects based on patient-reported data 2025
Under the new Share4Rare service portfolio and to encourage research on rare diseases, we are now accepting proposals to implement research projects on the platform. This process is open to patient
Biobanks: Research allies. A new episode of Rare Horizons.
One of the greatest challenges in rare disease research is the limited availability of biological samples. We all know that studies based on small sample sizes often yield less conclusive results than
Funding for the best collaborative research initiative: extension of the deadline for the Share4Rare Call4Projects
In response to inquiries and requests from those interested in this year's project call, Share4Rare will grant funding to the best collaborative research initiative based on data reported by patients
Rare Horizons episode 2 focuses on people living without a diagnosis
People need to name things. Naming is our way of creating some order in this chaotic world. Unfortunately, many people are not able to name their disease. In Europe, it takes an average of five years
Share4Rare will host a webinar on the 2024 research project call
Share4Rare aims to enhance research on rare diseases through collaborative knowledge generation. The platform provides researchers with a secure infrastructure to conduct their investigations