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 8th floor of Sant Joan de Déu Barcelona Children’s Hospital thanks to the unity, love and involvement of many families and friends
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
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
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
New Share4Rare research project for children with acute lymphoblastic leukemia!
Acute lymphoblastic leukaemia (ALL) is the most common type of cancer in childhood, but due to the treatments currently available, the overall survival of children with this disease is now 85%
Share4Rare’s most frequently asked questions
Over the last year, Share4Rare has gone from being merely an idea to being home for over 1,000 users pushing together against rare diseases. And we expect this to be only the beginning: with the first
Objective: increasing survival rates for children with cancer
More than 400,000 children and young people are expected to develop cancer every year. However, not all of them have the same chance to survive. In high-income countries (HICs), five-year survival
The role of social media on health communication
In the time since they first emerged in the early 2000s, social media have truly become the norm. Today they are widely used by individuals and businesses to communicate and stay connected; indeed
In rare diseases unity is strength
Behind every rare disease, every symptom, every diagnosis — when you are "lucky" to have one — there are personal stories that have many things in common: lack of specific health policies, lack of