Patient organizations can now register in Share4Rare!
In a global world in which relationships are built, grown and consolidated in digital environments, the active presence of patient organizations is key. In order to tackle this need, detected through
FEDER Rare Disease Information and Orientation Service (SIO): building bridges to improve the lives of the patients
For two decades, the Spanish Federation of Rare Diseases (FEDER) has been giving voice to more than 3 million people who live with a rare pathology in Spain. At the present time, the association
Share4Rare Webinar VIII: ‘State of the Art of Rare Disease Activities in Europe’
The Resource on the ‘State of the Art of Rare Disease activities in Europe’ is a well-established resource providing valuable, detailed information for all stakeholders in the field of rare diseases
Pulseras Candela: boosting childhood cancer research since 2013
The Association Pulseras Candela was set in motion 7 years ago on the 8 th floor of Sant Joan de Déu Barcelona Children’s Hospital thanks to the unity, love and involvement of many families and
Aleksandra talks about her experience of caring for her children with rare neuromuscular diseases
Aleksandra has two children affected by a rare neuromuscular disease. Her son has a diagnosis of limb-girdle muscular dystrophy type 2D (LGMD2D) and her daughter has a diagnosis of collagen VI
Coronavirus and rare diseases — How can we reduce transmission and cope with a rare disease during these days?
The new coronavirus outbreak is affecting people all across the planet, but there are communities who are especially vulnerable to this situation. We have learned that people over 60 — and this is
Share4Rare webinar VII: ‘Online Advocacy – Social Media & Valuable Tools’
Learnings In this webinar, Bettina Ryll, Gilliosa Spurrier-Bernard and Violeta Astratinei from the Melanoma Patient Network Europe will share learnings and best practices from their work in patient
First Consensus Meeting of the Melanoma Patient Network Europe: What does a uveal melanoma guideline have to cover?
First, what actually is uveal melanoma? ‘Uveal melanoma is a cancer that starts in the pigment-producing cells of the eye. It is one of the rare forms of melanoma as it only affects about 6 people out
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
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. This
An international congress to be held in Barcelona will boost research in infantile gliomatosis cerebri
The III International Congress for Research on Infantile Gliomatosis Cerebri will be held in Barcelona next September 22nd and 23rd, and it is organized by Izás, la princesa guisante (Spain) and co
Share4Rare criteria for meaningful patient involvement in clinical research
Patient involvement in medicines development continues to grow, as all stakeholders involved in developing accessible medicines realize they should be involving the end customer - the patient - from