Get to know all the testimonies of the initiative #youthwithcourage posted on June-July:

  • Mina lives with a rare disease called DiGeorge’s syndrome or velo-cardio-facial syndrome. When she was a teenager, she was also diagnosed with scoliosis idiopathic.
  • Mikel, 22 years old , has a degenerative neuromuscular disease, called Spinal Muscular Atrophy Type II.
  • Alex is the administrator and regional delegate for the association CMT France, which helps patients suffering from Charcot Marie Tooth disease, the disease he also suffers..
  • Alicia is a young woman of 22 years old who suffers from muscular dystrophy. Her mother points out that society doesn’t worry about rare diseases or muscular dystrophies, and she ask for bigger support.
  • Samuele, 21 years old, studies Mechanical Engineering at La Sapienza and is passionate of hockey. He also suffers Duchenne muscular dystrophy (DMD).

 

The initiative, co-funded by the Erasmus+ Programme of the European Union, aims at the creation of a European network of European foundations, institutions, and entities in order to promote the exchange of experiences and good practices. The partners of the initiative are:

  • Fundación Isabel Gemio (Spain)
  • Federación Española de Enfermedades Neuromusculares (Spain)
  • Parent Project APS per la Ricerca sulla Distrofa Muscolare (Italy)
  • Charcot-Marie-Tooth et Neuropathies Peripheriques (France)
  • Uniamo Federazione Italiana Malattie Rare (Italy)

 

Second transnational meeting of the Erasmus+ YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE

Toulouse was the chosen venue to hold the second transnational meeting of the Erasmus+: YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE. The partners met last Friday, July 22nd, to analyse the progress of the project and to coordinate the following steps.

Aiming to improve the statistics of the IGTV: YOUTH WITH COURAGE, the partnership decided to develop a newsletter with all the information of the project so far and to launch a campaign on social media to encourage people suffering from rare diseases to share their own story. Besides, the consortium will launch a questionnaire to evaluate the impact of the IGTV: YOUTH WITH COURAGE in three different target groups: young people with rare diseases beneficiaries, youth technicians and volunteers and the European society.

The third transnational meeting of the project will be held in Rome, on October 24th. Follow us on social media to know more information about the initiative:

Kick-off meeting of the Erasmus+ project ‘THE VALUE OF FACING SCHOOL’

The kick-off meeting of ‘THE VALUE OF FACING SCHOOL: THE INCLUSION OF YOUTH WITH NEUROMUSCULAR DISEASES, MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN EDUCATION’ was hold last Wednesday, June 22nd, 2022. The online meeting, coordinated by Fundación Isabel Gemio, was attended by representatives of all the partner organizations of the project:

  • Universidade de Évora (Portugal), a center for the creation, transmission and diffusion of culture, science and technology, which, through the articulation of study, teaching and research, is integrated into the life of society.
  • Fondation Maladies Rares (France), which has the French legal status of “Scientific Cooperation Foundation”, a private non-profit legal person, promotes research projects and scientific excellence, as well as the sharing and dissemination of knowledge in the field of rare diseases.
  • Federación Española de Enfermedades Neuromusculares (Spain), a non-governmental organization that brings together associations and foundations for neuromuscular diseases. It currently represents more than 60,000 people affected throughout Spain.
  • Parent Project per la Ricerca sulla Distrofa Muscolare (Italy), an association of patients and parents with children affected by Duchenne and Becker muscular dystrophy.
  • Uniamo Federazione Italiana Malattie Rare (Italy), the representative body of the community of people with rare diseases. It has over 150 member associations, which are constantly growing.
  • C.E.I.P. Clara Campoamor de Málaga (Spain), an early age and primary public school of bilingual education that uses research, experimentation and educational innovation as a fundamental element of teaching practice.

The main objective of the project THE VALUE OF FACING SCHOOL is to create a partnership for cooperation, improving the quality of the work, activities and practices of the organizations and institutions involved. Besides, it should develop the capacity of the organizations to work transnationally and across different sectors, to address common priorities and needs, and to make a change in educational methods to students with muscular dystrophies.

During the meeting, Fundación Isabel Gemio explained the different phases of management and implementation of the project. The partnership will develop two main intellectual outputs: a DIGITAL METHODOLOGICAL GUIDE that will decisively help the school and the teachers to meet the educational needs of students with muscular dystrophy and other rare diseases; and a set of DIGITAL OPEN EDUCATIONAL RESOURCES (OERs) adapted to the beneficiaries and developed by experts, that really contribute to developing the educational competences of students with muscular dystrophy and other rare diseases. The project will end with the celebration of a MULTIPLIER EVENT in which the main results of the initiative will be presented to the beneficiaries themselves, and to social entities, policy makers, and scientific experts, as well.

The first face to face meeting of the consortium is planned to be held on October, in Madrid, Spain.

 

 

 

¿Did you watch the stories #youthwithcourage of May?

Here are the protagonists of the initiative co-funded by the #erasmusplus programme:

  • Laura (@laura.sanchez.92) highlights the importance of professionalized personal assistance for people with disabilities. She has a rare disease called Arthrogryposis Multiplex Congenita.
  • Alice (@alifata1988) collaborates with @radioaidel22@aidel22_aps, where she runs a program called “Women and Disability”. She suffers from a rare disease called Microdeletion of Chromosome 22.
  • Juan (@mi_heroe_juan), the youngest of them all, really likes listening to music. He suffers from Congenital Disorders of Glycosylation (CDG). His mother, Cristina, claims that all the people suffering from a very serious disease deserve a treatment.
  • Audrey was diagnosed with the disease Charcot Marie Tooth when she was three and a half years old. She has travelled around the world (@roulettesetsacados) and she is now starting her own business in textile design.
  • Michelewho lives in Rome, is passionate about football and Formula1. He lives with Duchenne Muscular Dystrophy (DMD).

The initiative, co-funded by the Erasmus+ Programme of the European Union, aims at the creation of a European network of European foundations, institutions, and entities in order to promote the exchange of experiences and good practices. The partners of the initiative are:

  • Fundación Isabel Gemio (Spain)
  • Federación Española de Enfermedades Neuromusculares (Spain)
  • Parent Project APS per la Ricerca sulla Distrofa Muscolare (Italy)
  • Charcot-Marie-Tooth et Neuropathies Peripheriques (France)
  • Uniamo Federazione Italiana Malattie Rare (Italy)

 

First transnational meeting of the initiative YOUNG WITH RARE DISEASES: THE VALUE OF FACING LIFE

The first transnational meeting of the initiative YOUTH WITH RARE DISEASES, co-financed by the Erasmus+ Programme of the European Union, was held yesterday, May 26th, in Madrid, with the participation of:

  • Fundación Isabel Gemio
  • La Federación Española de Enfermedades Neuromusculares (España)
  • Parent Project per la Ricerca sulla Distrofa Muscolare (Italia)
  • Charcot-Marie-Tooth et Neuropathies Peripheriques (Francia)
  • Uniamo Federazione Italiana Malattie Rare (Italia)

Firstly, the participants met at Fundacion Isabel Gemio to analyse the progress so far and to continue with the development of the project. After the presentation of the main results of the IGTV: YOUTH WITH COURAGE, the partners agreed to develop new dissemination actions and to design different evaluation activities to measure its impact. Besides, it was decided the date of the second transnational meeting, which will take place in Toulouse in July.

Afterwards, the partners had the opportunity to talk to one of the protagonists of the initiative, Mikel Villanueva, who shared his experience within the project. Mikel, who suffers from Spinal Muscular Atrophy Type 2, is 22-year-old. He combines his studies at the University with his new job in a pharmaceutical company. One of his great passions is wheelchair hockey. In fact, he will travel to Switzerland this summer to play the World Championships. Mikel also shared his insight on the representation of rare diseases on social media.

Once the meeting was over, the members enjoy the catering offered by SECOE, which has joined the initiative to help give visibility to young people suffering from rare diseases. During the break, the partners continue to share experiences and strengthen ties. At all times, the entities showed their willingness to establish a collaboration network that will allow the development of initiatives on an international scale.

The day ended with a meeting with the second vice-president of the Congress of Deputies, Dña. Ana Pastor, accompanied by the spokespersons for Health and Social Rights of the Popular Parliamentary Group, Elvira Velasco and Alicia García, who listened attentively to the objectives of the initiative. They also highlighted the importance of research and commented on some of the latest breakthroughs. They recognised that there is still much to be done and that it is necessary to continue working hard to improve the reality of people affected by rare diseases and their families.

The meeting was joined by the President of the Foundation, Isabel Gemio, who advocated for the visibility of rare diseases and outlined some ideas that she hopes to put into practice to continue helping research. She also thanked the help and support of Dr. Ana Pastor, who has always shown her concern and who is fully aware of the situation of rare diseases. They maintained their commitment to continue cooperating in order to help to advance research and to raise awareness of these pathologies.

 

The initiative YOUNG PEOPLE WITH RARE DISEASES is co-funded by the Erasmus+ Programme of the European Union.

 

 

KICK-OFF MEETING OF YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE

The kick-off meeting of “YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE” was hold last Tuesday, March 29th, 2022. The online meeting, coordinated by Fundación Isabel Gemio, was attended by representatives of all the partner organizations of the project:

  • The Federación Española de Enfermedades Neuromusculares (ASEM) (Spain), a non-governmental organization that brings together associations and foundations for neuromuscular diseases. It currently represents more than 60,000 people affected throughout Spain.
  • Parent Project per la Ricerca sulla Distrofa Muscolare (Italy), an association of patients and parents with children affected by Duchenne and Becker muscular dystrophy.
  • Charcot-Marie-Tooth et Neuropathies Peripheriques (France), an association of patients with peripheral neuropathies, which aims to break the isolation by bringing together people with CMT or similar neuropathies.
  • Uniamo Federazione Italiana Malattie Rare (Italy) is the representative body of the community of people with rare diseases. It has over 150 member associations, which are constantly growing.

The project aims to give visibility to those young people who suffer from rare diseases, not only as a mechanism to recognize their value, but as an example that can inspire in values and good practices Besides other young people affected can learn to live with their disease and reach the highest levels of inclusion.

During the meeting, we presented the dissemination plan of the IGTV: YOUTH WITH COURAGE, the platform that will gather the inspiring testimonies of people with rare diseases, and the visual logo for the initiative. The partnership also planned the different strategies that we will follow to attract people’s attention and to engage them into the different initiatives. Partners also had the opportunity to share and exchange examples of good practices as the CMT France Congress, hosted recently in Saint-Malo (Britain), with nearly 400 hundred participants, or the summer camp organized every year by ASEM for children with neuromuscular diseases.

The first face to face meeting of the consortium is planned to be held on May, in Madrid, Spain.

Resultados de las líneas de investigación financiadas por la Fundación Isabel Gemio

En el documento adjunto podéis encontrar los resultados de las siete líneas de investigación financiadas por la Fundación.

Enlace: LINEAS FIG

 

Abierta la consulta publica sobre la evaluación final del III Programa de salud (2014-2020)

La Comisión Europea ha abierto la consulta sobre  la evaluación final del tercer Programa de Salud, que se desarrolló entre 2014 y 2020, analizará:
  • sus resultados y el impacto de dichos resultados
  • su eficacia, rentabilidad y valor añadido de la UE
  • lo que funcionó bien y lo que no lo hizo.

Las enseñanzas extraídas de la evaluación se utilizarán para mejorar la aplicación del cuarto Programa de Salud, que se desarrollará entre 2021 y 2027.

Si interesa puedes ver todos los detalles en los siguientes enlaces:
Tercer programa de salud (2014-2020): evaluación final

Acerca de esta consulta

Periodo de consulta
11 Marzo 2022 – 03 Junio 2022  (medianoche, hora de Bruselas)
Tema
Salud pública

Destinatarios

Nos gustaría escuchar los puntos de vista de: ciudadanos de la UE a título personal, instituciones gubernamentales a nivel nacional o regional de la UE o del EEE, administraciones centrales o ministerios de salud, organizaciones gubernamentales de salud pública, autoridades o agencias de salud pública, organizaciones internacionales, organizaciones académicas y de investigación, organizaciones no gubernamentales, proveedores de servicios sanitarios, organizaciones que representan a proveedores de servicios sanitarios, profesionales sanitarios, asociaciones de profesionales sanitarios, pacientes o usuarios de servicios sanitarios, organizaciones que representan a pacientes o usuarios de servicios sanitarios, empresas privadas o sindicatos y expertos independientes.

Por qué consultamos

El objetivo de la consulta es recabar información (por ejemplo, enseñanzas extraídas de la aplicación del tercer Programa de Salud 2014-2020) y pruebas para completar los resultados preliminares de la investigación documental y recoger datos e información más específicos sobre los resultados de las acciones concretas y sus repercusiones. Estas son las actividades de consulta: — una consulta pública que durará 12 semanas — una consulta específica a determinadas partes interesadas. La consulta pública y la consulta específica a determinadas partes interesadas tendrán por objeto los siguientes criterios: eficacia, eficiencia, pertinencia, coherencia con otras políticas y programas de la UE, valor añadido de la UE.

Responder al cuestionario

Puede participar en la consulta cumplimentando el cuestionario online. Si no puede utilizar el cuestionario en línea, contáctenos en la dirección de correo electrónico que figura a continuación.

Los cuestionarios están disponibles en algunas o todas las lenguas oficiales de la UE. Puede enviar sus respuestas en cualquiera de las lenguas oficiales de la UE.

Por motivos de transparencia, se insta a las organizaciones y empresas que participan en consultas públicas a inscribirse en el Registro de Transparencia de la UE.

Para poder contribuir, tendrá que registrarse o iniciar sesión a través de su cuenta de redes sociales.

Datos personales e intimidad

La Unión Europea se compromete a respetar la vida privada de los usuarios. Al llevar a cabo consultas públicas, seguimos la política de protección de las personas físicas en lo que respecta al tratamiento de datos personales por las instituciones comunitarias, basada en el Reglamento 45/2001 relativo al tratamiento de datos personales por las instituciones de la UE del Parlamento Europeo y del Consejo, de 18 de diciembre de 2000.

Más información sobre la protección de sus datos personales

FUENTE: COMISION EUROPEA (UE)

El grupo ATRESMEDIA y la Fundación Isabel Gemio apoyan la investigación en enfermedades raras

Una vez más, el Grupo Atresmedia, apoya la investigación en enfermedades raras.

 

ATRESMEDIA CORPORACIÓN y la FUNDACIÓN ISABEL GEMIO han firmado un convenio de colaboración mutua para difundir la labor social realizada por la Fundación a través de la emisión de las campañas de sensibilización para promover la investigación en enfermedades minoritarias y la sensibilización de las mismas .

Las cuñas se emitirán en los programas de Julia en la Onda, Más de Uno, Gente Viajera, Por fin no es lunes, Fórmula Europa FM y la Brújula.

Esta primera quincena de marzo y a lo largo de toda la programación de radio del Grupo se podrá escuchar información sobre la Fundación en sus programas con el fin de ayudar a sus líneas de investigación y de la realidad de las personas afectadas por alguna de las más de 7.000 enfermedades raras diagnosticadas en el mundo y que afectan a millones de personas.

Muchas gracias de corazón.

 

 

 

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