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
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
The rebellion of the leukocytes: Íngrid’s story
One day, in the summer of 2018, Íngrid felt an unusual pain in the elbow and she noticed it was swelling. The traumatologist concluded that it was due to a simple tendonitis probably caused by the
Research projects on rare paediatric tumors and acute lymphoblastic leukemia are about to start!
On the occasion of International Childhood Cancer Day , which is commemorated annually on February 15 th , Share4Rare launches two new research projects that will help improve scientific knowledge
When the sun is your enemy: Pol’s story
When Pol was only two months old, the first sunburn appeared on his face. Shortly after, similar injuries began to show, major burns in those areas of his body that were not protected by clothing,
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