Supporting families and science: keys in the fight against pediatric cancer at the Miguel Servet Children's Hospital in Zaragoza
27 February, 2025
The average wait for a diagnosis of a rare disease is between 5 and 10 years
3 March, 2025
The event will take place in the Sala de la Corona of the Pignatelli Building in Zaragoza at 16:30 p.m. Free admission with prior registration, the event will include with health professionals from the IIS Aragón, IACS, FEDER and the Aragonese health services
The next Friday, March 7 will be held from 16:30 to 19:10 at the Crown Room of the Pignatelli Building of the Government of Aragon in Zaragoza (Pº. Mª. Agustín, 36) the 'World Rare Disease Day in Aragon'.
On the occasion of World Rare Disease Day, IACS organizes the day in Aragon to make visible the reality of patients and their familiesAs well as challenges facing the Health professionals in diagnosis, treatment and research. Through presentations and discussion panels, the following topics will be addressed: latest scientific advances, access to therapies innovative and the importance of coordination between the different levels of care. With this event they seek to ccreate a meeting space for professionals, patients and associations, where we can share experiences, learn about the latest advances and reflect together on how to improve the care and quality of life of those who live with these pathologies.
The event is organized by the Aragonese Institute of Health Sciences (IACS) and the Government of Aragon, in collaboration with the General Directorate of Assistance and Planning and the Spanish Federation of Rare Diseases (SPRING). In addition, Takeda and UCB are sponsoring the event.
This day is communication to professionals, patients, family members and anyone interested in learning more about rare diseases and how we can improve the care and quality of life of those who live with them every day. Can asist to the event, complete the form through this link Before the March 5.
PROGRAMME
16:30 – Reception of attendees.
16:45 - Opening.
- D. Jose Luis Bancalero. Health Minister of Aragon.
- D. Juan CarrionPresident of FEDER and its Foundation.
17: 00 - Rare Diseases Strategy in Aragon, institutional vision.
- Moderated by: Mrs. Maria Soledad Corbacho, Head of the Healthcare Offer Service of the General Directorate of Health Care and Planning
- D. Ramon Boria. Director General of Health Care and Planning of the Government of Aragon.
- D. Angel LanasDirector of the Aragon Health Research Institute.
- Mrs. Elena GonzalvoManaging Director of the Aragonese Institute of Health Sciences.
- D. Alvaro Couceiro, Government Advisor for Social Policies. Zaragoza City Council
- D. Angel Val, Managing Director of the Aragonese Institute of Social Services.
- Mrs. Sara Guillen, Director of the Hospital Care Area of the Aragonese Health Service.
18:00 – Patient Testimony.
18: 10 - Rare Diseases Strategy in Aragon, healthcare vision
- Moderated by: Mrs. Maria Bestue, Neurologist at the Miguel Servet University Hospital.
- Mrs. Immaculate Garcia, Pediatrician at Miguel Servet University Hospital.
- D. Miguel Angel Torralba, Internal Medicine Physician and Researcher at the Lozano Blesa University Clinical Hospital.
- Mrs. Silvia Izquierdo, Head of the Genetics Section at the Miguel Servet University Hospital.
- D. Jose Maria Soria, Member of the Board of Directors of FEDER.
- Mrs. Ana Bandres, Coordinator of Rational Use of Medicines, Aragon Health Service
19: 10 - Closing of the day.
- Mrs. Marian Oros, Councillor for Social Policies and Councillor for Equality. Zaragoza City Council
Event host: Juanjo Hernández.
Source: IACS
