We organize the first multiplier events of the Erasmus+ THE VALUE OF FACING SCHOOL

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On 29th and 30th November, we held the first multiplier events of the Erasmus+ THE VALUE OF FACING SCHOOL, co-funded by the European Union. The aim of these events is to present the results of the project, which ultimate goal is to improve the inclusion and accessibility of people affected by rare diseases and muscular dystrophies in the educational context. In addition, we had the chance to talk about the Erasmus+ funding projects, which connects professionals from different countries of Europe in order to develop and implement projects for the benefit of education, culture and youth, among other areas. 

On Wednesday 29th November, we held an online conference with the collaboration of the teacher Juanjo Izquierdo (El Desván de J) for educators, which could be followed via YouTube and ZOOM. We underlined that rare diseases affect 3.5%-5.9% of the world’s population and more than 30,000,000 people in the European Union. We also explained the different types of diagnoses and treatments available nowadays, paying special attention to the human genome research, the gene editing technique CRISPR and the orphan drugs. In the second half, we discussed the impact of digitalization in the classroom and shared inclusive methodologies to implement at school, such as project work, universal learning design and gamification. Finally, we presented the website and social networks of the project to facilitate access to the results and activities.

The following day, Thursday 30th November, it was the turn of CEIP Escuelas Bosque in Madrid. The event was part of the ‘Semana de las Distintas Capacidades’ (Week of the Different Abilities) organized by the school every year. We presented the methodological guide and the online educational resources to families and professionals from the education sector. One of the central topics of discussion was the need to create multidisciplinary teams in schools, composed by health services and other organisations, in order to enhance the quality of education for students affected by these pathologies.

In the last part, we heard the testimonial of Laura Sánchez, vice-president of Federación ASEM and affected by Congenital Arthrogryposis Multiplex, who has collaborated closely with the project. Laura explained that, in her case, the school provided her with a personal assistant. «Most of the times, the teachers and the school showed interest in my disease and supported me with everything I needed,» she said. Laura claims that digitalisation is very useful and that technological devices such as the voice coder made her educational performance much easier.

In the coming weeks, we will hold new multiplier events and dissemination activities to ensure that our goals benefit as many people as possible.

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New online meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION

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On Thursday, November 23rd, the partnership of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLSUION, co-funded by the European Union, held a new online meeting to analyze and monitor the progress of the intellectual outputs.

The partnership has already decided the contents of the methodological guide that will help organizations and institutions to implement the mentoring process. This document will also provide useful information, activities and resources for big and younger brothers to establish a relationship of mutual trust and comprehension. It was also agreed that, next year, the partnership will launch a multimedia viral campaign to increase the impact of the initiative.

The ultimate goal of the project is to create a network of national rare disease organisations to design and implement an empowerment strategy for young people living with barriers to become mentors and big brothers to other young people and children experiencing the same barriers from all over Europe.

The partnership will meet again in February, in Rome, to continue working on the results and to plan the structure and design of the online platform BIG BROTHER FOR INCLUSION, a digital a tool for young people with RD to apply for a big brother or apply to become one.

We will keep you informed of everything. ¡Follow us on social media and don’t miss anything!

We test the results of the Erasmus+ THE VALUE OF FACING SCHOOL with the students of the primary school Clara Campoamor in Málaga

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The partnership of the Erasmus+ THE VALUE OF FACING SCHOOL, co-funded by the European Union, met at the primary school CEIP Clara Campoamor (Málaga), on November 17th, to conduct the pilot test of the project. It was divided into two different groups: 6th grade students (10-11 years) / 2nd (6-7 years old) grade students. Among the students were children affected by rare diseases and neuromuscular dystrophies, as well as other pathologies such as autism. School teachers and parents also participated in the pilot tests.

The partnership explained that the Erasmus+ programme connects professionals from different countries of the European Union aiming to develop initiatives to support education and youth. We also explained that when we talk about rare diseases, the adjective «rare» should be interpreted as «infrequent», because of the low prevalence of individual rare diseases and the large number of existing rare diseases. However, it must be clear, that these pathologies affect more than 30 million of people in Europe.

During the event, we put into practices some of the resources we have developed within the project. We showed them a video of inspiring stories of young people affected by these pathologies as an example of courage and strength. We also did a role play to encourage students to experience the difficulties that these young people must overcome in their daily life.  And we learned to use pictograms for communication, which helped us to understand the importance of using an inclusive language to represent all kinds of people. Besides, we shared with teachers and parents inclusive methodologies and multiple recommendations to benefit digital learning.

We would like to thank you the primary school CEIP Clara Campoamor and all the participants for the kindness and support. All the students, parents and teachers showed a collaborative and willingness attitude.  It was very exciting to finally see the results of the project developed by the partnership working for the inclusion and accessibility of the people affected by rare diseases and neuromuscular dystrophies. All the people interested in the initiative would find more information in the web platform www.faingschool.eu.

Évora welcomes the partnership of the Erasmus+ THE VALUE OF FACING SCHOOL for the 3rd transnational meeting

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The partnership of the Erasmus+ THE VALUE OF FACING SCHOOL, co-funded by the European Union, met in Évora (Portugal) on October 10th for the 3rd transnational meeting of the project. The participants reviewed the progress of the intellectual outputs and planned the organization of the pilot test that will be carried out in CEIP Clara Campoamor (Málaga) by the end of November.

Fundación Isabel Gemio, coordinator of the project, and Universidad de Évora, host organization of the meeting, presented a complete version of the methodological guide INCLUSION AND EQUITY IN SCHOOL. This document will provide broad information of the necessities of people affected by rare diseases and their families, and it will underline the importance of social awareness and education on rare diseases. This digital document will also explain some learning inclusive methodologies such as learning through project, universal learning design and gamification.

Afterwards, the partners presented the Open Educational Resources, which are a wide variety of activities and documents that aim to help teachers, students, and parents to overcome the different barriers that they face in the school context. These documents will address topics such as digitalization, blended learning, accessibility and inclusion.

As mentioned before, the next step will be to test the accuracy of the intellectual outputs in the primary school Clara Campoamor (Málaga) by the end of November. This will help us to identify potential problems and to evaluate the results.  

If you want to know more information about the Erasmus+ project THE VALUE OF FACING SCHOOL, co-funded by the European Union, check out the webplatform (www.facingschool.eu) and follow us on social media.

Launch of the web platform of the Erasmus+ ‘THE VALUE OF FACING SCHOOL’

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The web platform of the Erasmus+ THE VALUE OF FACING SCHOOL, co-funded by the European Union, is now available (www.facingschool.eu). The aim of the project is to:

  • Help students with rare diseases to achieve educational success.
  • Promote schools able to offer a high-quality blended learning.
  • Facilitate synergies between family, medical experts and school teachers.
  • Facilitate de digitalization of education to make it more inclusive.
  • Promote social awareness on rare diseases and the need to contribute to their research.

The partnership of the project, with entities from Spain, France, Italy and Portugal, has developed two intellectual outputs to help teachers, families and students achieve these goals:

  • The METHODOLOGICAL GUIDE provides information, guidelines, curricular adaptations, and evaluation mechanisms adapted to the reality of the students.
  • The OPEN EDUCATIONAL RESOURCES are a set of digital educational materials to facilitate the teaching action of educators and support parents when their children must access blended learning.  

In the following weeks, we will start posting testimonies and stories of people affected by rare diseases during their school years. This will allow us to raise awareness about the obstacles and barriers these people must overcome in the classroom.

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First transnational meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION

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On July 24th, 2023, we held the first transnational meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION. All the partners involved in the project (Fundación Isabel Gemio, Federación ASEM, Parent Project APS, Rare Diseases Croatia and Cyprus Alliance for Rare Disorders) attended the meeting in Madrid to define the structure and objectives of the principal results of the initiative co-funded by the European Union.

First, Fundación Isabel Gemio presented the conclusions of the analysis report ‘RARE DISEASES ON EUROPEAN YOUTH’ developed by the consortium. The aim of the report was to understand the situation of young people affected by Rare Diseases in Europe:

  • In 2008, the European Commission adopted the Communication “Rare Diseases: A Challenge for Europe”. It focused on three main areas: improving the recognition and visibility of RDs; supporting RD policies in Member States; and developing European cooperation, coordination, and regulation in relation to RDs.
  • In the EU, Rare Diseases are those whose prevalence is below 5 per 10,000 inhabitants.
  • It is estimated that there may be more than 7,000 rare diseases.
  • The 80% has a genetic origin and two thirds manifest themselves before two years old.
  • Young people with rare diseases in Europe are affected by the absence of accessible infrastructures, psychological support, genetic counselling services, low level of teacher and employer awareness, accessible education and employment programmes, disability awareness and acceptance.

As to the mentoring process, in which a big brother will help a younger brother to overcome obstacles and barriers of the daily life, the partners agreed that it will be divided into different phases such as building the relationship, feedback and assessment, skill-building and problem advice.

After the meeting, Dra. Belén Pérez welcomed the consortium at the CBM Severo Ochoa, a pioneer scientific centre ascribed to the Universidad Autónoma de Madrid. During our visit, Dra. Perez’s team and PhD students explained to partners the latest findings on the line of research ‘Translational Research in Hereditary Metabolic Diseases and Other Rare Genetic Diseases’ and we could observed on the microscopes some samples of their studies. We would like to thank Belén and their students for their time and generosity.

The partnership of the Erasmus+ Quality Youth Mentoring for Inclusion will meet again next September to continue developing the results of the initiative.

Kick-off meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION

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The kick-off meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION: A BIG BROTHER TO OVERCOME SHARED BARRIERS was held on June 6th, 2023. The online meeting, coordinated by Fundación Isabel Gemio, was attended by representatives of all the partner organizations of the project:

  • Federación Española de Enfermedades Neuromusculares
  • Parent Project per la Ricerca sulla Distrofa Muscolare
  • Rare Diseases Croatia
  • Cyprus Alliance for Rare Disorders

The main objective of the project QUALITY YOUTH MENTORING FOR INCLUSION is to create a network of national rare disease organisations to design and implement an empowerment strategy for young people living with barriers. We will develop a training course for mentors and big brothers that help young people experiencing similar barriers, so they can develop their self-confidence, learn about their situation and consequences, and discover mechanisms to achieve inclusion.

Other goals of this initiative, co-funded by the European Union, are to promote the inclusion of young people and children with RD (Rare Diseases) through active participation and volunteering and to create a more inclusive European culture where local communities, social partners and governments support children and young people living with RD.

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

New online meeting of the Erasmus+ THE VALUE OF FACING SCHOOL

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The partnership of the Erasmus+ THE VALUE OF FACING SCHOOL, co-funded by the European Union, held a new online meeting on April 20th to analyse and monitor the progress of the project.

This time, the partnership discussed the first part of the IO1. INCLUSION AND EQUITY IN SCHOOL (methodological guide), that will help students with rare diseases to achieve educational success. It will also analyse the impact and consequences of the Covid-19 pandemic in education, and it will underline the necessity of specialized training for professionals in contact with people affected by rare diseases.

As to the IO2. FACING MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN SCHOOL (Open Educational Resources), the partnership agreed to create a key map of icons that will improve the accessibility of the material. This will help to connect the guide with the practical activities focus on digitalization, inclusive methodologies and health services.

The third transnational meeting of the Erasmus+ THE VALUE OF FACING SCHOOL will take place in Évora (Portugal) on October 10th. Besides, the partnership developed a dissemination plan that will give visibility to the project. “Follow us on social media and don’t miss anything”.

IIS La Fe researcher, Javier Poyatos, defends his doctoral thesis and receives outstanding distinctions

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Javier Poyatos, from the Neuromuscular Pathology and Ataxias research group at the La Fe Health Research Institute, has defended his thesis, “Study of the spontaneous deletion of exons 45-55 in the DMD gene and its application as a gene therapy model. Analysis of conditioning factors of the phenotype and study of the cell model”, directed by doctors Juan Jesús Vílchez, Teresa Sevilla, Rafael Vázquez.

The court has awarded the new doctor an outstanding rating.


Javier’s research in these years has had financial support from the Isabel Gemio Foundation, among other institutions.


Congratulations, Dr. Javier Poyatos!

Fundación Isabel Gemio commemorates World Rare Disease Day together with young people affected and their families

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On the occasion of World Rare Disease Day, the Isabel Gemio Foundation has organized a round table with young people affected by rare diseases and their families at Banco Santander’s Work Café in Madrid. Isabel Gemio herself has been in charge of giving voice to the testimonies of Jessica, Juan and Olivia. Cristina, Juan’s mother, has told her son “Juan, you are not rare / weird… you are extraordinary!”

During the event, which was also streamed, we also learned the stories of Abraham and Anabel, who use social networks and online platforms as tools to publicize their illness and their daily routine. Abraham has said that “we should not pay attention to rare diseases only today, but every day of the year.”

We have learned about the latest scientific advances from Dr. Lluis Montoliu and Isabel Gemio has highlighted the importance of research for those affected by rare diseases and for the whole of society.

Isabel took advantage of the event to also talk about the Erasmus+ project coordinated by the Foundation, YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE. More than a thousand people, including young people affected by rare diseases, families, volunteers and youth technicians, have benefited directly and indirectly from this initiative that seeks to give visibility to these types of pathologies and raise awareness among society about the importance of science and research. The success of the project will allow the Isabel Gemio Foundation to continue working on other European projects and on new initiatives that take advantage of partnerships achieved across Europe.