AELMHU convenes and promotes the Awards with the aim of contributing to a better and greater knowledge of rare diseases and orphan drugs, to recognize the work of professionals and organizations and to distinguish the best care, dissemination and awareness projects on rare diseases.
AELMHU
AELMHU
VI Edition
AELMHU Awards 2024
Jury's decision 2024 Awards
| Award for the best care project on rare diseases | María de Villota First Star Program of the Ana Carolina Diez Mahou Foundation |
| Award for the Best Professional Research Career in the field of rare diseases | Dr. Lluís Montoliu José |
| Award for Best Rare Disease Outreach Project | Run, stop Ataxia Telangiectasia of the Spanish Association of Families Affected by Ataxia Telangiectasia (AEFAT). |
| Award for Best Communication, Outreach and/or Awareness-Raising Work on Rare Diseases | Dr. José Luis Poveda Andrés |
| AELMHU Honorary Award 2024 | Dr. Josep Torrent - Farnell (posthumously)- Award granted by AELMHU associates. |
AELMHU 2024 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).
- Ms. Susana Fernández. Vice-president of the National Association of Health Informers (ANIS).
- Mrs. Carmen Fons. Member of the Spanish Society of Pediatric Neurology (SENEP).
- 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.
- Mr. Jorge Francisco Gómez. Coordinator of the Minority Diseases Group of the Spanish Society of Internal Medicine SEMI).
- Mrs. María Esperanza Marcos. President of the Health Law Section of the Madrid Bar Association.
- Mr. Jorge Mestre. Health economist.
- Mr. Jordi Nicolás. Vice-president of the Spanish Society of Hospital Pharmacy (SEFH).
- D. Manuel Pérez. Vice-president of the Orphan Drugs and Rare Diseases Foundation (MEHUER).
- Ms. Belén Pérez. Vice-president of the Spanish Association of Human Genetics (AEGH).
- Ms. Raquel Sánchez. Lawyer and spokesperson for the Honorary Award 2023.
- Marian Corral. Director of AELMHU (without vote).
Categories 2024:
- Award for the Best Care Project on rare diseases. Projects aimed at improving health outcomes and quality of life of individuals or patient populations with rare diseases, carried out in national territory that are being executed or have been executed as of the year 2021. Research projects in preclinical phase will not be accepted. Financial endowment: 3.000€.
- Award for the Best Professional Research Career in the field of rare diseases. Healthcare professionals with experience in rare disease research and with at least 15 years of work experience in this field. Financial endowment: €3,000
- Award for the Best Dissemination Project on Rare Diseases. Dissemination and/or awareness project to help raise visibility and awareness of rare diseases, and the realities of patients and their families. The scope of the project will be national and can be running at the time of submission or have been implemented from the year 2021. Financial endowment: €3,000
- Award for the Best Communication, divulgation and/or awareness-raising work on rare diseases. Person who, having exercised his/her professional activity in the field of health or without having done so, has carried out a communication, divulgation and/or awareness-raising work helping to make visible the existence/problem of rare diseases. This category is open to health professionals or people whose professional activity does not belong to the health field. For example, and merely by way of example, the following: lecturers, disseminators, content creators, writers, etc. Financial endowment: €3,000
- AELMHU 2024 Honorary Award for their work or contribution to improve the lives of people with rare diseases. Any entity or body belonging to the public sector, whatever its legal status, association, institution, foundation or individual that stands out or has stood out for its work or contribution to improve the lives of people with rare diseases. Without financial endowment
Calendar 2024:
- Deadline for submission of applications: June 30, 2024
- Communication of court decision: September 2024
- Awards ceremony: November 2024
Contact us to clarify any doubts you may have: 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:
- Award for the Best Care Project on Rare Diseases.
- Award for the Best Professional Career in the field of rare diseases.
- Award for the Best Project for the dissemination, diffusion and/or awareness-raising of rare diseases.
- 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:
- Awarded: Institution: Hospital Sant Joan de Déu de Barcelona, for the project: "La Casa de Sofía".
- Finalist: "Guía de Asesoramiento Preconcepcional desde Atención Primaria", coauthors: Ismael Ejarque Doménech, María Isabel Castelló López and José Vicente Sorlí Guerola.
Best Professional Career in the field of Rare Diseases:
- Awarded: Dr. Francesc Palau Martínez, physician and scientist.
- Finalist: Dr. José María Millán Salvador, specialist physician and researcher.
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.
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
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
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 of the Institute for Research in 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.
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.
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.
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?
I Edition
November 2017
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.
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.
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.
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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