Newsletter
A “genetic pencil” achieves remission of a lethal leukemia in two terminally ill teenagers
Health launches a project to optimize the use of umbilical cord blood for urgent transplantation
INDEPF Fridays: “Decent Employment for People with Disabilities”
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
The National Platform for Neonatal Screening Support and Equity in the Healthcare System holds its first meeting since its establishment
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
Healthcare and the present situation in Castilla-La Mancha took center stage in the political debate organized by INDEPF and New Medical Economics
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
INDEPF inaugurates its new Rare Multidisciplinary Room
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
Fighting for expanded newborn screening
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
Multitudinous solidarity march for little Alberto
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
Plasencia asks for ‘A bone marrow for Alberto’
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
The “Platform in support of expanded national neonatal screening” is born in Malaga
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
INDEPF has started meetings with political parties to express the needs of patients with rare diseases
The Institute of Research and Social Development of Rare Diseases (INDEPF) has held a meeting with Ms. Carmen Picazo, provincial deputy of Cs in Albacete,
The professionals at INDEPF reinvent themselves to be able to continue their activity
The members of the INDEPF team, a non-profit organization based in Campo de Criptana and the San Carlos Clinical Hospital in Madrid, have decided to
INDEPF receives the visit of the regional PSOE to talk about the needs of the rare diseases community
The Institute for Research and Social Development of Rare Diseases (INDEPF) met today with representatives of the regional PSOE in Castilla La Mancha to express
INDEPF meets with the Ministry of Health to express their concern about the inequity of neonatal screening
Professionals from INDEPF, a non-profit organization dedicated to defending the rights of patients with rare diseases, met this morning at the Ministry of Health with
INDEPF meets with the President of the Healt Commission of the Spanish Congress of Deputies
D. Jesús Ignacio Meco, president of INDEPF, met today with Dña. Rosa Romero, president of the Health Committee of the Congress of Deputies, to discuss
Santiago Lázaro, the mayor of Campo de Criptana, visits the work of the care center that Indepf is refurbishing
Indepf is rehabilitating the Attention Center for patients with rare diseases to include two new consultation rooms and a training room and event hall. The