(ERN) are virtual networks involving healthcare providers across Europe for share knowledge in the patient’s diagnosis and treatments.
both Solid Organ Transplantation (SOT) and Hematopoietic Stem Cell Transplantation (HSCT) which are low-prevalence and complex conditions that requires highly specialized expertise and resources.
There is evidence that paediatric transplantation is the only curative therapeutic procedure targeted to the children population that has the highest mortality rates in their age group. The current approach is performed focused on a specific disease or organ.
We are pleased to announce the Second Solidarity Run organized by La Paz Hospital. This year, the slogan will be "Madrid moves for the transplanted children", within the framework of the ERN TransplantChild network. It will be held on Sunday, October 28 from 9h, with options of 10Km, 6Km and 3Km. In addition to the children's race at 11h.
In July 2018 the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals from diverse backgrounds, engaged in rare disease research anywhere in the world. Several ERNs have signed up as members, but we would be delighted to receive registrations from individual HCPs and research groups.
Interested in joining? Fill out the registration form to become a member! For more information about the RD-Connect Community, please visit https://rd-connect.eu/about-rd-connect/become-member/
Paediatric transplantations require a complex, life-long follow-up. For patients like Paula the European Reference Networks bring a ray of hope.
European Reference Networks: a ray of hope for patients with rare and complex diseases, their families and doctors.
Paediatric transplantations require a complex, life-long follow-up. For patients like Paula the European Reference Networks bring a ray of hope.
European Reference Networks for rare and complex diseases
Video presenting the European Reference Networks
Segunda Edición del "Curso de Formación Continua en Trasplante Pediátrico (Órgano sólido y Hematopoyético)": Aproximación al trasplante desde un Enfoque Trasversal" que se impartirá los miércoles 26 de septiembre, 31 de octubre y 28 de noviembre de 2018 (10h-18:30h), Salón de Actos - Aula Jaso - Hospital Infantil – Hospital Universitario La Paz, Madrid.
Programa del Curso: Acceder aquí
Inscripciones: A través del siguiente enlace
As we announced it will be held in Brussels, Belgium the 23rd of November 2018. Registration open until the 20th of August. If you are not registered yet please contact us.
ESOT announces the TLJ 2018 Programme (Transplantation Learning Journey), held from 6 to 10 November, 2018, in Munich, Germany.
Under the theme of "Transplant Learning Journey", the TLJ 2018 will serve as a platform for speakers and participants to engage in a variety of presentations, dynamic discussions, networking opportunities, to lead a new platform in the field of transplantation.
end-stage disease with a more sustainable chronic disease state and as such has profound clinical and psychosocial consequences, even more challenging in children, with more impact on the growing process.
Is a cross-cutting approach to supports common areas in different types of transplants as immunosuppression, rejection, tolerance, risk of infection and psychosocial wellbeing.
Transplanted children shift their primary disease to lifelong chronic condition or `disease´, mostly imposed by the necessary treatment regimens to avoid rejection.
This network is initially integrated for 18 HCP from 11 Members States with highly qualified multiprofesional teams and proven experience in PT.