Webinars for patient organizations: how to conduct research based on patient-reported data
A few weeks ago, we opened the period for reception and evaluation of projects based on patient-reported data for 2026. Therefore, at Share4Rare, we have organized a series of webinars aimed at
Patient experience as a compass for innovation: the voice of patient organizations at Nano Rare Diseases Day 2026
On March 5th, the Institut de Recerca Sant Joan de Déu (IRSJD) and the Institute for Bioengineering of Catalonia (IBEC) held another edition of Nano Rare Diseases Day, a key event that brings together
“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
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
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
Anorectal malformations and Hirschsprung's disease
Anorectal malformations (ARM) and Hirschsprung's disease (HD) are congenital colorectal conditions, meaning individuals are born with them, although their causes are not necessarily genetic. Their
The role of patient organisations in implementing newborn screening for rare diseases
A recent article published in the Rare Disease and Orphan Drugs Journal highlights the critical role of patient organisations in promoting newborn screening for rare diseases. The goal of these tests
Marta Farré — Mother of a boy with epidermolysis bullosa
When Adrià was born, doctors noticed that he had severe wounds on his legs and feet. The gynaecologist who attended to them first mentioned the disease: epidermolysis bullosa (EB), a genetic condition
Sant Joan de Déu Barcelona Children's Hospital and FEDER join forces to tackle rare diseases
The new collaboration agreement between Barcelona's hospital and the Spanish umbrella organisation aims to drive knowledge-sharing, enhance coordination, and foster experiential exchange through
Pere Cardona, Spanish Association of Stiff Person Syndrome: "Being able to talk and be close to someone who is going through the same thing can really save you"
Isabel worked at a supermarket in Calella (Barcelona). 10 years ago, when she was getting ready to go to work, she noticed how her right leg would not follow the orders she was sending from her brain
Share4Rare Call4Projects 2022 for patient-centred research initiatives
Share4Rare aims to put rare diseases patients at the centre of research , not only by asking them directly regarding their condition but also by providing them a safe platform where they can