The Spanish Association of Orphan and Ultra-Herphan Drug Laboratories presented the awards of the sixth edition of the AELMHU Awards, in an emotional evening full of recognition in which the most relevant contributions in the field of rare diseases were highlighted. Institutions, patient associations and healthcare professionals were the main protagonists of an event that took place in Madrid, with the participation of institutional representatives, industry and the scientific and healthcare community.
The president of AELMHU, Beatriz Perales, opened the ceremony by highlighting the crucial role of the people and organizations committed to improving the lives of patients with rare diseases, some of whom were present, such as the Spanish Federation of Rare Diseases (FEDER). The journalist María Rey was in charge of conducting an event that closed with an emotional speech by César Hernández, General Director of the Common Portfolio of Services of the National Health System and Pharmacy of the Ministry of Health. The event included words of support and solidarity for the people affected by the recent DANA, in a gesture that further united those present in the fight for the visibility and treatment of rare diseases.
The jury of the awards, made up of renowned professionals from the sector, and represented on stage by Raquel Sanchez of the Spanish Patients' Forum (FEP), agreed on the need to continue to promote research and on the importance of a multidisciplinary and joint approach to minority diseases and orphan drugs.
Award for Best Assistance Project: Ana Carolina Díez Mahou Foundation.
In an emotionally charged ceremony, Javier Pérez-Mínguez, director of the Ana Carolina Díez Mahou Foundation, received the Award for the Best Care Project for his innovative program, "Primera Estrella María de Villota", which combines medical, psychological and sports care to improve the quality of life of these young patients. Javier, who, as a father, knows first-hand the experience of having a child with a rare disease, placed special emphasis on the importance of continuing to work to offer a better future to those affected by these pathologies. The award was presented by Belén Pérez, vice-president of the Spanish Association of Human Genetics, and Raquel Sánchez (FEP).
Award for the best research career: Dr. Lluís Montoliu
The Award for the Best Professional Research Career went to Dr. Lluís Montoliu, an outstanding researcher in the field of albinism and a pioneer in applied biotechnology and gene editing, who received the award from Mª Esperanza Marcos, president of the Health Law Section of the Madrid Bar Association and Mr. Jorge Mestre, health economist. In his speech, Dr. Montoliu underlined the importance of working together with the pharmaceutical industry and patient associations to advance in the treatment of rare diseases. During the event, he had an emotional memory for ALBA, the association for the help of people with albinism, with whom he has worked closely to improve the quality of life of those affected and whose president, Monica Puerto, entered live by videoconference to have a few words of affection and recognition for the excited awardee.
Best Awareness Raising Project Award: AEFAT
The Award for Best Dissemination and Awareness Project was presented to the Spanish Association of Families Affected by Ataxia Telangiectasia (AEFAT), in recognition of its inclusive sports and social awareness program, "Corre, frena la ataxia telangiectasia" (Run, stop ataxia telangiectasia). Hand in hand with Susana Fernández, vice-president of the National Association of Health Informers (ANIS) and Antoni Gilabert, director of Innovation and Partnership at the Health and Social Consortium of Catalonia, Rosa Casbas, head of Communications of the association, and Álvaro de Arqués, one of the associates, collected the award, thanking the volunteers and participants in the marathon that turned this activity into an experience of visibility and awareness. Rosa emphasized that "giving visibility to rare diseases is essential to accelerate their research and diagnosis".
Recognition of the work of communication: Dr. José Luis Poveda
The Award for Best Communication, Outreach and Awareness Award has been given to Dr. José Luis Poveda for his exceptional work in raising awareness in society about rare diseases and access to orphan drugs. Although DANA has prevented him from attending in person, Dr. Poveda has been able to participate by videoconference, thanking the recognition and extending his gratitude to all patients, health professionals and family members who, like him, fight to give visibility to these pathologies. In his speech, he stressed that "hope for rare diseases has a name, and that name is research".
As a finale to the presentation of this award, an emotional Dr. Poveda and the rest of those present were able to watch an emotional video that his loved ones and family had prepared for the occasion. The members of the jury Eva Bermejo, director of the Institute for Rare Diseases Research of the Carlos III Institute of Health, and Manuel Perez, vice president of the Orphan Drugs and Rare Diseases Foundation, will be in charge of guarding his award.
Posthumous tribute to Dr. Josep Torrent-Farnell
One of the most emotional moments of the evening was the AELMHU 2024 Honorary Award, given posthumously to Dr. Josep Torrent-Farnell , presented by César Hernández, Director General of the National Health System Common Portfolio of Services and Pharmacy, and the AELMHU Board of Directors.
Iolanda Arbiol, who had the good fortune to share many years working alongside Dr. Torrent, wanted to dedicate some very emotional words of recognition to him for his tireless work to improve the lives of patients with rare diseases. Afterwards, the award was presented to his family, his sister Carme and his nephew, who were deeply grateful for this tribute.
Dr. Torrent-Farnell was a key figure in the history of Spanish public health, and his legacy lives on through his work at the Spanish Agency for Medicines and Health Products (AEMPS), the European Medicines Agency and in the National Health System's rare disease strategy. His pioneering vision helped rare diseases receive the attention they deserve at the European and global level.
Innovation and commitment to society
Beatriz Perales, president of AELMHU, closed the ceremony by stressing that "orphan drugs provide great health value, but also economic and social value for Spain". In her speech, she stressed that innovation in the treatment of rare diseases is a fundamental asset for the future of society, reaffirming AELMHU's commitment to continue fighting for better access to treatments for patients.
Finally, César Hernández, Director General of the Common Portfolio of Services of the National Health System and Pharmacy of the Ministry of Health, closed the event by reminding the audience that rare diseases are a social commitment that requires the collaboration of all sectors to find solutions. "It is essential to continue working together to advance this objective," he added, closing an evening dedicated to solidarity, research and hope for millions of people affected by these pathologies.
The gala concluded with a speech by Cisco Garcia, a lawyer by profession who, after a snowboarding accident in December 2015, decided to reinvent himself and dedicate himself entirely to chair tennis, a sport in which he debuted as a professional in 2018.
Cisco, in addition to thrilling the audience with his story of overcoming his obstacles, has put the icing on the cake to a gala, one more year, tremendously emotional.
