Author name: Indepf

The Institute for Research and Social Development of Rare Diseases (INDEPF) held a prominent conference titled “Decent Employment for People with Disabilities”, presented by Ángel Luis Olivares, Managing Director of ALMIDA, a renowned organization dedicated to promoting the inclusion of people with disabilities in the workforce.  The lecture took place on Friday, May 26th at

This meeting has solidifiedas the starting point for the platform members’ actions to initiate their initiatives in support of expanded neonatal screening with equity. Following its creation, the founders of the National Platform for Neonatal Screening Support and Equity in the Healthcare System gathered this Thursday to establish the strategic lines, objectives, and actions they

This debate brought together representatives from various political parties running in the May 28th elections in Castilla-La Mancha. The Institute for Research and Social Development of Rare Diseases (INDEPF) and New Medical Economics jointly conducted the debate titled “Healthcare and the present situation in Castilla-La Mancha: a perspective on rare diseases.” The event took place

A renovation made possible thanks to a grant from the City Council of Ciudad Real and private initiatives such as PLADUR España and the La Caixa Foundation After months of undergoing renovations, the Center for Rare Diseases Care has inaugurated its new Rare Multidisciplinary Room, which will serve as an auditorium and training space, along

03/02/2023 Jesús Ignacio Meco Rodríguez 16 years ago, this term crossed my path. It was like a loud slap in the face. It turned out that after more than 6 months of fighting for my daughter’s life, I learned that if she had undergone the darn test, she would not have had such a traumatic

22/01/2023 http://salamancartvaldia.es The four-year-old boy is battling Burkitt Lymphoma and needs a donor compatible with him. The solidarity march organized by the Monterrubio City Council in support of little Alberto has welcomed hundreds of people this Sunday, January 22, willing to help. All the proceeds from the sale of bibs have been donated to INDEPF.

14/01/2023 canalextremadura.es More than a hundred motorcyclists show their support for this child and remind us of the importance of donating bone marrow Alberto is a 4-year-old boy from Salamanca who suffers from Burkitt lymphoma. He will start treatment next week, but if the results are not positive, he will need a bone marrow transplant

16/01/2023 Tamara Ramos Neonatal screening, commonly known as the “heel prick test”, is a blood test carried out on all newborns to detect potential metabolic diseases that are screened within a specific panel of pathologies. It is performed by extracting a few drops of blood from the heel of the newborn within 48 hours of