Natalí Dafne Flexer Foundation: helping children with cancer in Argentina for 25 years
Natalí developed cancer and died one year and three months after starting treatment, in July 1995. In her memory, her mother Edith created the Natalí Dafne Flexer Foundation (FNDF) to help children
Receiving a cancer diagnosis is always bad. But receiving a rare cancer diagnosis adds to the challenge.
Ocular melanoma is a rare form of melanoma and starts in the pigment-producing cells of the eye. About 6 out of a million people will be diagnosed with ocular melanoma every year, the large majority
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
The science corner: the immune system fighting cancer
A recent paper published in Nature Immunology has raised a lot of enthusiasm amongst scientists and patients. Its remarkable finding was a cancer receptor that enabled a new group of T cells to
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