Cancer, leukodystrophies, rare pediatric diseases, epilepsy, multiple sclerosis and diabetes. The presentation of the II Somos Pacientes Awards on Tuesday December 13th, saw different initiatives being developed and given recognition specifically within the area of the aforementioned six diseases. The Awards recognize the effort, dedication, talent and imagination that patients’ associations have carried out throughout the year, in order to offer assistance, services and solutions to their associates and society in general.
The ‘We Are Patients’ Awards are organised by the Farmaindustria Foundation through the online community of patients and patients with disabilities, ‘We Are Patients’. The finalists and winners in this particular edition are just one example of the hugely valuable, dozens of initiatives and activities and interest launched by associations of patients and people with disabilities over the last year.
The decision on the winners of this edition was made by a jury consisting of people of the highest scientific and professional prestige. Specifically, the jury was composed of Tomás Castillo, President of the Platform of Patient Organizations; Andoni Lorenzo, President of the Spanish Patients Forum; Estíbaliz Gamboa, Head of the Active Patient program in the Basque Country and Coordinator of the Technical Committee of the MSSSI Citizenship Health Network Network; Eva Carrasco; Scientific Director of the Spanish Breast Cancer Research Group (Geicam); Elsa González, President of FAPE (Federation of Spanish Press Associations); Emilio de Benito, President of ANIS (National Association of Health Informers); Rodrigo Gutiérrez, General Director of Quality and Humanization of Health Care of the Ministry of Health of Castilla-La Mancha and President of the Spanish Society of Attention to Health Users; Jesús Aguilar, President of the General Council of Official Associations of Pharmacists; Máximo González-Jurado, President of the General Council of Nursing; Martin Sellés, President of Janssen Cilag; Salvador Pons, Managing Director of Menarini; Tomás Olleros, President of Farmasierra; And Humberto Arnés, Director General of Farmaindustria, who served as the President of the jury.
In this way, and divided into two categories (Society and Patients), the winners of the awards fall into the following initiatives:
Patients Category – Better web or application development: Esclerosismultipleenlinea.org, of the Gaem Foundation, a free health and wellness website that offers the opportunity to those affected by Multiple Sclerosis, as well as to their relatives and people linked to the pathology, to expand their knowledge about the disease. In addition, the portal promotes research and knowledge of Multiple Sclerosis within general society and offers social care and counselling to patients and families.
Patients Category – Best initiative or campaigning within the field of social networks: Challenge 111 The King of the Unions, by Inbolo, a social network ‘competition’ with more than 400 participants, designed for patients with diabetes with the aim of achieving the highest number of glucose controls which a result of 111 mg / dl. without putting post-pandemic glycemia at risk.
Patients Category: Best patient service initiative: Palliative, paediatric care in rare diseases, by D’Genes. The general objective of the project, carried out in collaboration with the Virgen de la Arrixaca University Hospital of Murcia, was to improve the care and quality of life of paediatric patients with rare diseases and their families, suffering from terminal illness or having had no response to treatment. In a comprehensive and personalised way, guaranteeing respect for their dignity and the right to their autonomy.
Patients Category – Best initiative of social awareness or research promotion: Awareness campaign on epilepsy, the Association of Epilepsy by the Valencian Community (ALCE), with the purpose of normalizing epilepsy and building a real public opinion, migrating away from myths and false ideas; to spread knowledge of epilepsy and its problems amongst the population; and to ensure that institutions and the media become positive opinion makers in order to change society’s view of the disease.
Patients Category – Initiative preferred by users of Somos Pacientes, elected through online voting with the participation of more than 17,900 voters.- AMiMeToca, of the Spanish Association of Leukodystrophies (ELA), a campaign of awareness in social networks that has had the participation of Known faces to publicize an App donations, intended to raise funds, with the simple discharge of which is allocated the amount to the Association.
Society Category – In love and cancer, by the More Than Ideas Foundation, an information and support book that addresses the real life problems partners of cancer patients face, identifying strategies that minimize the physical, emotional and social consequences that the disease produces within the relationship of the couple, and in each one of its members.
The various winners of the Patients Category were awarded a commemorative trophy together with a sum of € 3,000. The award in the Society Category is limited to the trophy. In total, ‘We Are Patients’ received more than 120 applications to attend the second round of these awards, which have generated considerable expectation amongst the community of patients and people with disabilities in Spain.
The delivery of the II round of these awards has put the finishing touch to the celebration of the IV Jornada Somos Patientes. The event was held in the auditorium of the College of Architects of Madrid, with a capacity of more than 200 people, mostly representatives of associations of patients and people with disabilities, as well as professional groups, health administrations and pharmaceutical companies, under the chairmanship of the Secretary General of Health and Consumer Affairs, Javier Castrodeza.
‘We Are Patients’ (www.somospacientes.com) is an initiative launched to generate an online community of associations of patients and people with disabilities, which already has more than 1,650 entities, and offers a shared space of information, participation, training , services and collaborative work to all these organizations.