The partners of the Erasmus+ THE VALUE OF FACING SCHOOL hold a new online meeting

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The partnership of the Erasmus+ THE VALUE OF FACING SCHOOL met last Friday, December the 2nd, to analyse and monitor the progress of the project.

The objective of the online meeting was to define the structure and layout of the PR1. INCLUSION AND EQUITY IN SCHOOL (methodological guide) and to organize the topics and distribution of the RP2. FACING MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN SCHOOL (Open Educational Resources). The main topics of the intellectual outputs will be rare diseases, inclusion, mental health, digitalization, and inclusive learning, among others.

The partnership will met again on January 23rd, 2023, for the second transnational meeting that will be held in Barcelona.

YOUTH WITH COURAGE in October-November

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Get to know all the stories of October-November

  • Olivia is 14 years old and she suffers the Charcot Marie Tooth degenerative disease. In the future she wants to study biomedicine.
  • Davide was diagnosed with Williams syndrome when he was a few months old. Sports have helped him to overcome several barriers.
  • Andrés have Spastic Paraparesia. HE loves superheroes and his biggest dream is to become as fast as a lightning.
  • Cristina suffers Phenylketonuria, a rare disease that can lead to intellectual and motor disorders. She encourages people to support people with rare diseases.
  • Jacopo & Matteo are two friends from Italy affected by Duchenne Muscular Dystrophy (DMD). They ask people to treat them like any other person and to focus on their skills and possibilities.

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.

The scientific journal ‘Cells’ publishes a new study developed by Grupo Park with the collaboration of Fundación Isabel Gemio

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The scientific journal ‘Cells’, with almost 7.7 impact factor, has published the results of a study on autophagy modifications in myotonic dystrophy type I, developed by Group Park researchers with the collaboration of Fundación Isabel Gemio.

Grupo Park has been studying the molecular mechanisms involved in the aetiology of neurodegenerative diseases for 20 years. It is part of the Centro de Investigación Biomédica en Red sobre Enfermedades Neurodegenerativas (CIBERNED) of the Instituto de Salud Carlos III (ISCIII) and the Instituto Universitario de Investigación Biosanitaria de Extremadura (INUBE).

The research centre assures us that they continue to work on the same line of myotonic dystrophy type I and hope to be able to offer more tangible results soon.

Read the study in the following link: CELLS

PRESS: SIGLO XXI / Infosalus

A new study co-funded by Fundación Isabel Gemio Foundation advances our knowledge of a mutation responsible for Duchenne and Becker muscular dystrophies

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A Spanish multicentre study, co-funded by Fundación Isabel Gemio has deepened the understanding of the forms of expression of a rare mutation of the dystrophin gene that is responsible for Duchenne and Becker muscular dystrophies. The work suggests that this mutation (deletion of exons 45-55) could be used as a model for gene therapy advantageously compared to other alternatives that are currently in the experimental phase.

The research has been led by Juan Jesús Vílchez, from the Instituto de Investigación Sanitaria La Fe in Valencia, in collaboration with the group led by Pía Gallano from the Hospital San Pau in Barcelona. Numerous hospitals in Spain and research units from the IIS La FE, the University of Valencia and the Autonomous University of Barcelona have also participated.

Read more information on the following links:

CIBERISCIII

DiCYT

iSanidad

Did you watch all the stories we shared in September?

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  • Sara is 24 years old and she suffers a genetic disproportion of muscle fiber types, due to a mutation of RHNO gene.
  • Laura suffers the Charcot Marie Tooth disease (CMT). She was diagnosed with this disease when she was 7 years old. 
  • Mónica is 21 years old and she suffers three rare syndromes: Willkie syndrome, Nutcracker syndrome and May-Thurner syndrome.
  • Antonio is 19 years old, and he suffers Becker muscular dystrophy.

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)

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.