Cuarta y última reunión trasnacional del Erasmus+ JÓVENES CON ENFERMEDADES RARAS: EL VALOR DE ENFRENTARSE A LA VIDA

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El Erasmus+ JÓVENES CON ENFERMEDADES RARAS mantuvo su cuarta y última reunión transnacional en Barcelona el pasado 23 de enero de 2023. El partenariado comentó los resultados y analizó todas las actividades desarrolladas en el contexto del proyecto.

Esta iniciativa YOUTH WITH COURAGE ha publicado un total de 28 vídeos con testimonios de jóvenes afectados por enfermedades raras y distrofias musculares. La Fundación Isabel Gemio, coordinadora del Proyecto, presentó el informe final donde se analizaba el impacto en redes sociales. En total, los vídeos consiguieron más de 10 mil visualizaciones en las diferentes redes sociales de la iniciativa (Instagram, Youtube, Facebook y Twitter). Además, las publicaciones relacionadas con el proyecto sumaron más de 9 mil impresiones.

El cuestionario de evaluación desarrollado por el partenariado nos ha permitido extraer las siguientes conclusiones:

  • Todos los encuestados afirman que este tipo de iniciativas son beneficiosas para las personas que sufren enfermedades raras. Además, aseguran haber aprendido mientras veían los vídeos, en especial, subrayaron la valentía y la empatía, la importancia de la investigación y diferentes instrumentos para superar las dificultades.
  • En la pregunta relacionada con la inclusión, los encuestados señalan que es importante desarrollar iniciativas similares a YOUTH WITH COURAGE para concienciar a la sociedad. Asimismo, consideran que es necesario aumentar los recursos destinados y la formación y sensibilización de la sociedad con respecto a las enfermedades raras.

Durante la reunión, los socios acordaron publicar una segunda newsletter para informar sobre los resultados conseguidos durante la segunda parte del Proyecto. Además, se convino en crear una guía útil con toda la información relativa al proyecto.

Todas las entidades que han participado en el proyecto (Fundación Isabel Gemio, Federación ASEM, UNIAMO, Parent Project APS y CMT-France) quieren agradecer a los protagonistas, personas afectadas por enfermedades raras que han participado en la iniciativa YOUTH WITH COURAGE por su gran disponibilidad y colaboración, lo que ha facilitado mucho el trabajo y el éxito del proyecto. Durante estos meses, hemos conocido sus vidas, sus enfermedades, sus amigos y familias, sus grandes obstáculos y sus mayores sueños. Más que eso, ellos se han convertido en un ejemplo para los jóvenes y para la sociedad con sus enormes valores para afrontar la vida. También nos gustaría agradecer a la firma Pérez Llorca por acogernos y por su amabilidad, así como a todas las personas que nos ha mostrado su apoyo en las distintas fases del proyecto.

Finalmente, el partenariado llegó a la conclusión de que el Proyecto ha sido una experiencia muy positiva y enriquecedora, y se comprometió a continuar trabajando conjuntamente en iniciativas similares. El Proyecto JÓVENES CON ENFERMEDADES RARAS: EL VALOR DE ENFRENTARSE A LA VIDA está cofinanciado por el programa Erasmus+ de la Unión Europea.    

YOUTH WITH COURAGE in December-January

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Get to know all the stories of December-January:

  • Lethicia is 29 years old, and she suffers from Congenital Hypophosphatasia, an absence or low levels of serum alkaline phosphatase.
  • Nicolas Tricot is a researcher of the Institut national de la santé et de la recherche médicale looking for therapies for the Charcot Marie Tooth disease.
  • Bruno is 13 years old, and he suffers a disease called non-progressive congenital ataxia.
  • Roberta  is 23 years old and she suffers Ataxia, a rare disease which have many different variants. 

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)

Fundación Isabel Gemio coordinates the first transnational meeting of the Erasmus+ THE VALUE OF FACING SCHOOL

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The Erasmus+ THE VALUE OF FACING SCHOOL held its first transnational meeting in Rome on October 24th, 2022. The meeting room was placed at the Telethon Fondazione’s office, which it’s one of the entities that support the research of rare diseases in Italy and Europe. 

During the meeting, the partnership reviewed the progress of the methodological guide INCLUSION AND EQUITY IN SCHOOL that will focus on topics such as digitalization, inclusive pedagogies, and collaborative working methods. Aiming to make a change in educational methods to students with rare diseases, this guide will offer a complete overview of the situation in the different countries involved in the initiative.

Similarly, the partnership will develop a set of Open Educational Resources that will help teachers to create an inclusive environment; allow students to identify the barriers that face children with special needs; and provide parents with new mechanisms to communicate with the school board.

The partnership has also developed a web platform for the project, and has created profiles on Instagram and Facebook, to share the latest news of the initiative. Follow us to know more information about it.

This initiative is co-funded by the European Union.

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

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The Erasmus+ YOUNG PEOPLE WITH RARE DISEASES met in Rome on October 24th for the third transnational meeting of the project. The partnership analyzed the progress and coordinated the following steps. 

First, the participants reviewed the statistics of the IGTV: YOUTH WITH COURAGE. The audience in the different social media profiles has increased considerably since the last meeting. It was decided that the online questionnaire that will measure the impact of the initiative will be launched in November, along with the sustainability campaign that will allow people suffering from rare diseases to share their own stories with the hashtag #youthwithcourage.

Later, Stefano Benvenuti, Public Affair Manager of Telethon Italy, joined the meeting to explain the partnership the main lines of research supported by the Telethon Fondazione and the principal activities carried out to fund the investigation of genetic diseases. “Funding research is not enough: we want to turn the results of excellent scientific research into treatments that are accessible to all patients. Because everyone has the right to a cure”, he claimed.

Samuele, one of the protagonists of the initiative IGTV: YOUTH WITH COURAGE, also joined the meeting to share his experience with the partnership. “I really enjoyed participating in this project because the interview led me to reflect about my life and my values”, he explained. “I hope that the interview helps people to understand the positive and negatives things of my life”, he added.

The initiative YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE, is co-funded by the Erasmus+ programme of the European Union.

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

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  • 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

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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’

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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?

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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.
  • Michele, who 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

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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

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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.