• María Cecilia Foundation: improving the lives of families affected by childhood cancer

    The María Cecilia Foundation was established in 1991 by a group of parents of children diagnosed with cancer. Through their experiences, they envisioned to give life to an organization that could help
  • Meeting the partners — Melanoma Patient Network Europe

    Melanoma is a cancer starting in the pigment-producing cells of our body called melanocytes . The most common form of melanoma is skin melanoma . However, in rare cases, melanoma can also start in the
  • How online education can help children with rare diseases

    The number of European Union citizens living with rare diseases is estimated to be around 30 million , according to Eurordis Rare Diseases Europe . In fact, 1 in 17 people will be affected by a rare
  • 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
  • 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
  • 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