Once again this year, the Spanish Association of Orphan and Ultra Orphan Drug Laboratories presented its 2023 awards in Madrid. The ceremony was attended by exceptional guests: patient associations and federations, institutional representatives of the Ministry of Health, such as the Director General of the Common Portfolio of Services of the National Health System and Pharmacy, César Hernández and the Director of the Spanish Agency of Medicines and Health Products, María Jesús Lamas; the Member of Congress, Elvira Velasco and the President of the Health Commission and Member of the Madrid Assembly, Alma Ezcurra. All of them accompanied by a large number of AELMHU associates, representatives of the Pharmaceutical Industry, members, the jury, award winners, family and friends...
The event, presented by the journalist María Rey, was opened by the president of AELMHU, María José Sánchez Losada, who indicated that it has been "a key year in the development of legislative reforms at European, national and regional level", but "within this uncertainty, it is appreciated that the EE.RR. are not being forgotten, and are being part of the debate".
On the other hand, Eva Bermejo, member of the Jury, congratulated "all the participants and teams for the quality of this year's projects" and recalled that "every day we have to give the maximum for the significant improvement of patients' lives, and in the best of cases to get a treatment".
All the award winners agreed on the need to continue supporting and promoting research and on the importance of working together to achieve further advances in the field of rare diseases and orphan drugs.
The director of the Duchenne Parent Project Spain, Esther Sabando, accepted the award on behalf of this organization, on behalf of Eva Bermejo and Emilio de Benito, and encouraged to "continue fighting to improve the lives of those affected" and "to continue working, to that end, hand in hand with the administrations, companies, scientific societies and patient associations".
Similarly, Luis Enrique Villanueva, member of the Dravet Syndrome Foundation (Spanish Delegation), who received the award from Antoni Gilabert and Esperanza Marcos, used his speech to "thank and dedicate the award to the volunteers, patients and their families", as well as to "AELMHU for the work it does to promote research to improve the quality of life of patients".
In turn, Dr. Angel María Carracedo, whose award was presented to him by Manuel Pérez, president of Mehuer, after some words from María Jesús Lamas, director of the Spanish Agency of Medicines and Health Products, expressed his gratitude for the award and stressed that "although there is still much to be done in the field of rare diseases, such as improving equity in diagnosis, there are also reasons for hope, such as the IMPaCT - GENÓMICA program, which has managed to bring diagnosis closer to many patients".
And finally, after the projection of a video memorial, by numerous personalities, Raquel Sánchez Sanz, daughter of Dr. Julio Sánchez Fierro, collected the award given posthumously to her father from the hands of César Hernández and the entire Board of AELMHU, expressing her "eternal gratitude for the recognition" and conveying "the honor, the struggle, the commitment and the fight as values that her father had".
The Director General of the Common Portfolio of Services of the National Health System and Pharmacy, César Hernández, closed the gala by inviting everyone to "not forget the social commitment to people who have a name, since it is for all of them that we work" and calling on everyone to "work together for the benefit of these people".
Finally, it has been the athlete Alex Roca, who has been in charge of ending the gala as an example of where he has put in value "the importance of respect for others." With the celebration of these awards, AELMHU wants to continue promoting the sum of efforts in the field of rare diseases, recognizing each year the most outstanding contributions to the objective that defines the mission of the Association: to promote the knowledge of their pathologies and the recognition of the therapeutic and social value of pharmaceutical innovation and orphan drugs as instruments to improve the quality of life of thousands of citizens in Spain.