AELMHU convoca y promueve los Premios con el objetivo de contribuir a un mejor y mayor conocimiento de las enfermedades raras y los medicamentos huérfanos, reconocer la labor de profesionales y organizaciones y distinguir a los mejores proyectos asistenciales, de divulgación y sensibilización sobre las patologías minoritarias.

AELMHU

AELMHU

VI Edición
Premios AELMHU 2024

Categorías 2024:

  • Premio al Mejor Proyecto Asistencial sobre enfermedades raras. Proyectos destinados a la mejora de los resultados en salud y calidad de vida de los individuos o poblaciones de pacientes con enfermedades raras, efectuados en territorio nacional que se estén ejecutando o hayan sido ejecutados a partir del año 2021. No serán aceptados proyectos de investigación en fase preclínica.  Dotación económica: 3.000€

  • Premio a la Mejor Trayectoria Profesional investigadora en el campo de las enfermedades raras. Profesionales del ámbito sanitario con experiencia en la investigación de las enfermedades raras y con, al menos, 15 años de experiencia laboral en este campo. Dotación económica: 3.000€

  • Premio al Mejor Proyecto de difusión. Proyecto de difusión y/o sensibilización para ayudar a visibilizar y concienciar sobre las enfermedades raras, y las realidades de los pacientes y sus familiares. El ámbito del proyecto será nacional y se puede estar ejecutando en el momento de su presentación o haber sido ejecutado a partir del año 2021. Dotación económica: 3.000€

  • Premio a la Mejor Labor de comunicación, divulgación y/o concienciación sobre enfermedades raras. Persona que, habiendo ejercido su actividad profesional en el campo de la sanidad o sin haberlo hecho, ha realizado una labor de comunicación, divulgación y/o concienciación ayudando a visibilizar la existencia/ problemática de las enfermedades raras. En esta categoría se podrán presentar profesionales sanitarios o personas cuya actividad profesional no pertenezca al ámbito sanitario. Por ejemplo, y a título meramente enunciativo, los siguientes: conferenciantes, divulgadores, creadores de contenido, escritores, etc.  Dotación económica: 3.000€

  • Premio Honorífico AELMHU 2024 por su labor o contribución para mejorar la vida de las personas con enfermedades raras. Cualquier entidad u organismo integrante del sector público, sea cuál sea su régimen jurídico, asociación, institución, fundación o persona física que destaque o haya destacado por su labor o contribución para mejorar la vida de las personas con enfermedades raras. Sin dotación económica

Calendario 2024:

  • Plazo de presentación de candidaturas: 30 de junio de 2024

  • Comunicación fallo juzgado: septiembre 2024

  • Entrega de premios: noviembre de 2024

Contacta con nosotros para aclarar cualquier duda: informacion@aelmhu.es

V Edition
AELMHU Awards 2023

AELMHU 2023 Awards Jury

  • Mr. Jesús Aguilar. President of the General Council of Pharmaceutical Associations.
  • Ms. Eva Bermejo. Director of the Rare Diseases Research Institute of the Carlos III Institute of Health (ISCIII).
  • D. Emilio de Benito. Vice President of the Board of Directors of the National Association of Health Informers (ANIS).
  • Mr. Javier García. President of the Federation of Spanish Scientific Medical Associations (FACME).
  • D. Antoni Gilabert. Director of Innovation and Partnership at the Health and Social Consortium of Catalonia.
  • Mrs. María Esperanza Marcos. President of the Health Law Section of the Madrid Bar Association.
  • Mr. Jorge Mestre. Health economist.
  • Mr. José María Millán. Member of the Spanish Association of Human Genetics (AEGH). Genetics Unit, Hospital La Fe.
  • Mr. Jordi Nicolás. Vice-president of the Spanish Society of Hospital Pharmacy (SEFH).
  • D. Manuel Pérez. President of the Orphan Drugs and Rare Diseases Foundation(Mehuer).
  • Marian Corral. Director of AELMHU (without vote).

Jury's decision meeting: September 27, 2023


Jury's decision V edition:

  • Best Rare Disease Care Project:

Awarded: Project: Comprehensive Telematic Attention Service for people affected by Duchenne and Becker Muscular Dystrophy and their families, of the Duchenne Parent Project Spain Association.

  • Best project of divulgation, dissemination and/or awareness of Rare Diseases:

Awarded: Project: RetoDravet de Syndrome de Dravet Foundation (Spanish Delegation).

  • Best professional career in the field of Rare Diseases:

Awarded: Dr. Ángel María Carracedo Álvarez.

  • Honorary Award 2023 (elected by AELMHU members):

Posthumous award for Mr. Julio Sánchez Fierro


V Edition Awards Ceremony: the association presented the awards at an event held in Madrid on November 7, 2023.

IV Edition
AELMHU Awards 2022

Aim of the awards:

The aim of these awards is to recognise the work of professionals, organisations, associations and institutions that contribute to improving the healthcare and quality of life of people with rare diseases (RD) and/or give visibility to patients and their pathologies through awareness-raising and dissemination projects .

Awarded categories:

  1. Award for the Best Care Project on Rare Diseases.
  2. Award for the Best Professional Career in the field of rare diseases.
  3. Award for the Best Project for the dissemination, diffusion and/or awareness-raising of rare diseases.
  4. Honorary Award to a Public Body for its work in giving visibility to rare diseases.

Financial endowment:

One winner and one runner-up will be awarded in each category mentioned in the previous section except in category 4: "Honorary Award to a Public Body for its work in giving visibility to rarediseases" for which there will only be one winner.
The amount of the awards in the first three categories will be € 2,500 for the winners and € 800 for the runners-up. This amount will be donated to the organisation linked to rare diseases or research projects on these pathologies that each winner and finalist selects.

The 4th category will not be associated with a financial award.

Procedure and deadline for the submission of applications:

Nominations must be submitted via the web form at the bottom of this page between 21 April and 30 June 2022.

Evaluation and selection:

With the exception of category 4, the applications in the three categories will be evaluated by a jury made up of members of recognised prestige in the rare disease sector, belonging to institutions, patient associations or research centres. The decision will be taken by a majority of the members of the jury.

Jury members:

  • Ms. Eva Bermejo-Sánchez, Director of the Rare Diseases Research Institute of the Carlos III Institute of Health (ISCIII).
  • Mr. Juan Carrión Tudela, President of the Spanish Federation of Rare Diseases (FEDER).
  • D. Carlos García Collado, Deputy Director General of Pharmacy and Services in the Andalusian Health Service, Andalusian Regional Government.
  • D. Antoni Gilabert Perramon, Director of Innovation and Partnership at the Health and Social Consortium of Catalonia.
  • Mrs. Encarna Guillén Navarro, President of the AEGH. Medical Genetics Service of the Hospital C. U. V. Arrixaca. IMIB. UMU. CIBERER-ISCIII.
  • Ms. Coral Larrosa De Lope, vice-president of the National Association of Health Informers (ANIS).
  • Mr. Jordi Nicolás Picó, Vice-President of the Spanish Society of Hospital Pharmacy (SEFH).
  • Mr. José María Vergeles Blanca, Second Vice President and Minister of Health and Social Services of the Regional Government of Extremadura.
  • Marian Corral López, Director of ALEMHU (without vote).

Jury's decision:

Best Rare Disease Care Project:

Best Professional Career in the field of Rare Diseases:

Best Rare Disease Outreach, Dissemination and/or Awareness Raising Project:

  • Awarded: Asociación MPS-Lisosomales España, for the project "1st Certamen Raras internacional de Fotografía y Cortometrajes - El Cumpleaños de Estela" (1st International Rare Photography and Short Film Contest - Estela's Birthday).
  • Finalist: Asociación En Ruta por las Enfermedades Raras, for the project: "En Ruta por las Enfermedades Raras".

AELMHU 2022 Honorary Award (awards chosen by AELMHU members)

  • Mehuer Foundation, in recognition of its commitment to social knowledge and the promotion of epidemiological, clinical, therapeutic and social research into rare diseases.

Award ceremony:

The AELMHU awards were presented in Madrid on November 10, at 17:30 in the Espacio Bertelsmann and the institutional inauguration was given by Mr. César Hernández, Director General of Common Portfolio of Services of the National Health System and Pharmacy of the Ministry of Health.

Press release of the event

You can watch the complete gala here

III Edition
Honorary awards 2011-2021

AELMHU is bringing back its awards with a special edition on the occasion of the 10th anniversary of its foundation. The aim of these awards is to contribute to a better understanding of rare diseases and orphan drugs, as well as to a greater dissemination of the problems of those affected, the recognition of their pathologies, and the therapeutic and social value of pharmaceutical innovation as an essential tool to improve the lives of thousands of families in Spain.

The award ceremony took place in Madrid on 18 November 2021 and was presided over by the former Minister of Health and Second Vice-President of Congress, Ana Pastor, and presented by journalist Silvia Jato.

AELMHU managed to bring together a broad representation of its 19 member companies, members of the industry, and patient associations, as well as various members of the political and parliamentary spectrum, such as the Second Vice President and Minister of Health and Social Services of Extremadura, José María Vergeles, or Juan Carrión and Fide Mirón, President and Vice President of FEDER, among many others.

The AELMHU Awards Jury

Exceptionally, as this was an honorary edition for the 10th anniversary of the association, the jury for the awards was made up of AELMHU members. Through a working group created for this activity, the associates designed the categories and proposed the nominations. Once they had been finalised, they were put to the vote so that all members could participate. Once the voting was over, the results were communicated and the minutes were drawn up.

Awards:

1st Prize to an individual for his or her contribution and support to the Association.
Winner:
César Hernández, Head of Medicines for Human Use of the AEMPS.


2nd Prize to an organisation, centre or institution for its involvement in the encouragement and promotion of research in the US
Awarded:
Centro de Investigación Biomédica en Red en Enfermedades Raras del Instituto de Salud Carlos III (CIBERER)


3rd Prize for a project or initiative for the dissemination and diffusion of EE.RR. and/or MM.HH.
Winner:
Publication "Guía de las enfermedades Raras" by Javier Cano, Pedro Lendínez and Sonia Martín.


4th Award to a territorial entity for its commitment to Rare Diseases
Awarded:
Andalusia and Extremadura, for being the pioneers in developing a strategy on Rare Diseases in Spain.


5th Prize to the founders of AELMHU for their dedication, work and involvement in the setting up of the Association.
Awarded:
Jordi Casals, Juan Ferrero and Jordi Leal

Award rules

III Edition
Honorary awards 2011-2021

AELMHU is bringing back its awards with a special edition on the occasion of the 10th anniversary of its foundation. The aim of these awards is to contribute to a better understanding of rare diseases and orphan drugs, as well as to a greater dissemination of the problems of those affected, the recognition of their pathologies, and the therapeutic and social value of pharmaceutical innovation as an essential tool to improve the lives of thousands of families in Spain.

The award ceremony took place in Madrid on 18 November 2021 and was presided over by the former Minister of Health and Second Vice-President of Congress, Ana Pastor, and presented by journalist Silvia Jato.

AELMHU managed to bring together a broad representation of its 19 member companies, members of the industry, and patient associations, as well as various members of the political and parliamentary spectrum, such as the Second Vice President and Minister of Health and Social Services of Extremadura, José María Vergeles, or Juan Carrión and Fide Mirón, President and Vice President of FEDER, among many others.

The AELMHU Awards Jury

Exceptionally, as this was an honorary edition for the 10th anniversary of the association, the jury for the awards was made up of AELMHU members. Through a working group created for this activity, the associates designed the categories and proposed the nominations. Once they had been finalised, they were put to the vote so that all members could participate. Once the voting was over, the results were communicated and the minutes were drawn up.

Awards:

1st Prize to an individual for his or her contribution and support to the Association.
Winner:
César Hernández, Head of Medicines for Human Use of the AEMPS.


2nd Prize to an organisation, centre or institution for its involvement in the encouragement and promotion of research in the US
Awarded:
Centro de Investigación Biomédica en Red en Enfermedades Raras del Instituto de Salud Carlos III (CIBERER)


3rd Prize for a project or initiative for the dissemination and diffusion of EE.RR. and/or MM.HH.
Winner:
Publication "Guía de las enfermedades Raras" by Javier Cano, Pedro Lendínez and Sonia Martín.


4th Award to a territorial entity for its commitment to Rare Diseases
Awarded:
Andalusia and Extremadura, for being the pioneers in developing a strategy on Rare Diseases in Spain.


5th Prize to the founders of AELMHU for their dedication, work and involvement in the setting up of the Association.
Awarded:
Jordi Casals, Juan Ferrero and Jordi Leal

Award rules

II Edition
November 2018

In its second edition, the AELMHU Awards had three categories and an honorary award: 

Award for the best research career in rare diseases and/or orphan drugs.

  • Award for the best clinical career in rare diseases.
  • Award for the best work in the dissemination of knowledge on rare diseases and/or orphan drugs. 
  • Honorary Award to an outstanding personality in the field of orphan drugs, without financial endowment.

The financial endowments of the awards went entirely and directly to donations to organisations or projects linked to rare diseases and/or orphan drugs. The winner of each category received an award and had the opportunity to select the organisation to which AELMHU will donate the amount of €5,000.

The AELMHU Awards Jury

The Jury was composed of personalities of recognised prestige in the rare disease and orphan drug sector:

  • Josep Torrent-Farnell, Head of the Medicines Area of CatSalut, President of the jury.
  • Juan Carrión, President of the Spanish Federation for Rare Diseases (FEDER).
  • Reyes Abad, Head of the Pharmacy Service of the Miguel Servet University Hospital in Zaragoza.
  • Paloma Casado, Deputy Director General for Quality and Cohesion, Ministry of Health.
  • César Hernández, Head of the Department of Medicines for Human Use of the AEMPS.
  • Pablo Lapunzina, Scientific Director of CIBERER.
  • Francesc Palau, Director of the Genetic and Molecular Medicine Service at the Paediatric Institute for Rare Diseases (IPER).
  • Emilio de Benito, President of the National Association of Health Informers.
  • Manuel Pérez, President of the College of Pharmacists of Seville
  • Manuel Posada, Director del Instituto de Investigación en Enfermedades Raras (IIER).

Awards:

Best Research Career in Orphan Diseases and Orphan Drugs:

Dr. Antonio Fontanellas Romá, researcher at the Centre for Applied Medical Research of the University of Navarra, for his work in the biochemical and molecular characterisation of rare metabolic diseases and, in particular, in the development of new therapies for the porphyrias.

In its second edition, the AELMHU Awards had three categories and an honorary award: 

Award for the best research career in rare diseases and/or orphan drugs.

  • Award for the best clinical career in rare diseases.
  • Award for the best work in the dissemination of knowledge on rare diseases and/or orphan drugs. 
  • Honorary Award to an outstanding personality in the field of orphan drugs, without financial endowment.

The financial endowments of the awards went entirely and directly to donations to organisations or projects linked to rare diseases and/or orphan drugs. The winner of each category received an award and had the opportunity to select the organisation to which AELMHU will donate the amount of €5,000.

The AELMHU Awards Jury

The Jury was composed of personalities of recognised prestige in the rare disease and orphan drug sector:

  • Josep Torrent-Farnell, Head of the Medicines Area of CatSalut, President of the jury.
  • Juan Carrión, President of the Spanish Federation for Rare Diseases (FEDER).
  • Reyes Abad, Head of the Pharmacy Service of the Miguel Servet University Hospital in Zaragoza.
  • Paloma Casado, Deputy Director General for Quality and Cohesion, Ministry of Health.
  • César Hernández, Head of the Department of Medicines for Human Use of the AEMPS.
  • Pablo Lapunzina, Scientific Director of CIBERER.
  • Francesc Palau, Director of the Genetic and Molecular Medicine Service at the Paediatric Institute for Rare Diseases (IPER).
  • Emilio de Benito, President of the National Association of Health Informers.
  • Manuel Pérez, President of the College of Pharmacists of Seville
  • Manuel Posada, Director of the Institute for Research on Rare Diseases (IIER).

Awards:

Best Research Career in Orphan Diseases and Orphan Drugs:

Dr. Antonio Fontanellas Romá, researcher at the Centre for Applied Medical Research of the University of Navarra, for his work in the biochemical and molecular characterisation of rare metabolic diseases and, in particular, in the development of new therapies for the porphyrias.

Dr. Fontanellas, award winner, and Mr. César Hernández, member of the Jury.

Best Clinical Career in Rare Diseases:

Dr. Joan Albert Barberà Mir, Head of the Pneumology and Respiratory Allergy Service at Hospital Clínic de Barcelona and coordinator of the CIBERES Pulmonary Hypertension Research Line, for his clinical activity in the field of pulmonary hypertension.

Best work in the dissemination of knowledge on Rare Diseases and Orphan Drugs:

D'Genes Rare Diseases Association of Murcia for the annual organisation of the International Congress on Rare Diseases.

Honorary award: Professor Magdalena Ugarte, Director of the Centre for Molecular Disease Diagnosis at the Autonomous University of Madrid.

Margalena Ugarte, award winner, and Josep María Espinalt, President of AELMHU.

Finalists:

  • Best Clinical Career: Dr. María Luz Couce Pico, Director of the Unit for the Diagnosis and Treatment of Hereditary Metabolic Diseases at the Hospital Clínico Universitario de Santiago de Compostela; and Dr. David Araújo, specialist in Endocrinology and Nutrition at the Complexo Hospitalario Universitario de Santiago (CHUS).
  • Best Research Career: Dr. Juan Ignacio Aróstegui, physician at the Immunology Service of the Hospital Clínic, and Dr. Antonio M. Bañón Hernández, scientific director of the 'Communication and Society' Research Centre. 
  • Best dissemination work: the Mucopolysaccharidosis and Related Syndromes Association (MPS Spain) and Vanesa Pérez Padilla, author of the blog "¿Y de verdad tienes tres?

Award rules

I Edición
Noviembre 2017

Family photo, members of the Jury, winners, finalists and members of AELMHU.

The first edition of the AELMHU Awards had three categories:

  • Award for the best research career in rare diseases and/or orphan drugs.
  • Award for the best clinical career in rare diseases.
  • Award for the best work in the dissemination of knowledge on rare diseases and/or orphan drugs.

The financial endowments of the awards went entirely and directly to donations to organisations or projects linked to rare diseases and/or orphan drugs. The winner of each category received an award and had the opportunity to select the organisation to which AELMHU donated the amount of €5,000.

The AELMHU Awards Jury

The AELMHU Awards jury, made up of clinical and scientific professionals, rare disease experts, representatives of political institutions and journalists:

  • Josep Torrent-Farnell, President of the Jury. Head of the Medicines Area of CatSalut.
  • Dr. Reyes Abad, Head of the Pharmacy Service of the Miguel Servet University Hospital in Zaragoza.
  • Ms. Paloma Casado, Deputy Director General for Public Health, Quality and Innovation of the Ministry of Health.
  • D. César Hernández, Head of the Department of Medicines for Human Use of the AEMPS.
  • Dr. Pablo Lapunzina, Scientific Director of CIBERER.
  • Dr. Francesc Palau, Director of the Genetic and Molecular Medicine Service of the Paediatric Institute for Rare Diseases (IPER).
  • Ms. Elisabet Pedrosa, journalist at Catalunya Ràdio.
  • D. Manuel Pérez, President of the College of Pharmacists of Seville.
  • Dr. Manuel Posada, Director of the Institute for Research on Rare Diseases (IIER).
  • Ms Margarita Iniesta, Executive Director of AELMHU, member of the Jury without voice or vote.

AELMHU

AELMHU Award for the Best Research Career in Orphan Diseases and Medicines:

Dr. Luisa María Botella, from the Spanish National Research Council, received the award for her work in the search for effective treatments against the development of Von Hippel-Lindau disease (VHL) and telangiectatic haemorrhage.

Dr. Luisa María Botella

AELMHU Award for the Best Clinical Career in Rare Diseases:

Dr. Judith Silvia Armstrong and Dr. Mercè Pineda, from the Hospital Sant Joan de Déu in Barcelona, were awarded for their contribution to the diagnosis of Rett Syndrome.

Dr. Judith Silvia Armstrong Morón and Dr. Mercè Pineda Marfà

Award for the best work in Dissemination of knowledge on Rare Diseases and/or orphan drugs:

Ms. Fide Mirón, author of the website: http://www.fidemiron.com/ , president of ADIBI and vice-president of FEDER, awarded for her fight for social and health change for people with disabilities and people affected by rare diseases in Spain.

Fide Mirón, awarded for her work in Dissemination of knowledge on Rare Diseases and/or orphan drugs: pemio and Josep Mª Espinalt, President AELMHU

Finalists:

  • Best Clinical Career: Dr. Roser Torra, head of Hereditary Kidney Diseases (HKD) at the Fundació Puigvert in Barcelona and associate professor at the Universitat Autònoma de Barcelona. Dr. Roser Torra Balcells has devoted herself continuously to hereditary kidney diseases since she finished her nephrology residency.
  • Best Research Career: Dr. David Araújo, Professor of Medicine at the University of Santiago de Compostela and specialist in Endocrinology and Nutrition at the University Hospital of Santiago (CHUS). Since 2003 he has focused his clinical and research activity on infrequent lipodystrophic syndromes, and is currently one of the most internationally recognised experts in these disorders.
  • Best outreach work: ALPE Acondroplasia Foundation. It was created in 2000 thanks to the enthusiasm of several people, especially the Press-Lewis family. Its aim is to meet the educational needs, early care, school follow-up, social, cultural and labour integration of people affected by achondroplasia and other common forms of dwarfism. The Foundation also seeks to develop the children's potential from a global perspective of integrative medicine that includes physiotherapy, speech therapy, osteopathy and homeopathy, as well as any other approach that can help them to feel strong, balanced and healthy. Its scope of work is international and it collaborates with all kinds of specialists, without rejecting any therapeutic orientation that can bring wellness and health. ALPE has a very extensive network of national and international collaborators, and promotes free clinical follow-up for patients and their families from 20 countries In 4 different continents.

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