Fundación Isabel Gemio holds new multiplier events of the Erasmus+ THE VALUE OF FACING SCHOOL

In recent days, Fundación Isabel Gemio has held new multiplier events for the initiative THE VALUE OF FACING SCHOOL, co-funded by the European Union:

  • Last Monday, February 26th, we celebrated the XVI Anniversary at the Real Casino de Madrid. During the event, attended by nearly 300 personalities from the business, culture, society, sports, and communication sectors, we presented the objectives and results of the project.
  • Two days later, on Wednesday, February 28th, the team moved to the Colegio Internacional G. Nicoli to present the benefits of the initiative and the need to improve inclusion and accessibility in the educational environment to around 50 students of the Nursing Assistant Intermediate Degree.

Discover all the news about the Project on the website and social media.

Roma receives the second transnational meeting of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION

On February 16th, 2024, the partners of the Erasmus+ project QUALITY YOUTH MENTORING FOR INCLUSION met in Rome to hold the second transnational meeting of the project. The main objective of the meeting was to review the progress of the intellectual outputs and to develop the dissemination plan.

The partners have identified that the mentoring process for people affected by rare diseases will have three main beneficiaries:

  • The affected people, who will develop their self-determination skills as well as their social and professional capacities.
  • The institutions implementing the project, which will be able to create an inclusive working environment and to connect with individuals of unique skills, perspectives, and experiences.
  • Parents/caregivers will benefit from the increased autonomy of the youth and a reduction in stress due to additional support from the mentor.

The project will also develop a training process for mentors that will provide them with tools and resources to guide the younger brother and help them achieve the goals and objectives established at the beginning of the project. Over the next few months, we will gather testimonials from people affected and we will carry out dissemination activities to raise awareness among people and the beneficiaries can proceed with the registration on the online platform.

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The partnership of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION holds a new online meeting

The partners of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION met this Tuesday, February 6th 2024, to review the progress of the project and plan the next activities.

The project is going to create a digital platform that will allow young people with rare diseases (RD) to request an older brother or apply to become one. This platform will connect the young person with their older or younger brother and with the rare disease entity in their country.

What qualities define a good mentor?

  • Be supportive and positive.
  • Listen carefully and show interest in the mentee’s experiences and needs.
  • Be honest and authentic.
  • Create a safe space for sharing thoughts, feelings, and making mistakes.
  • Encourage the mentee to explore their strengths and abilities.

If you want to be part of the Project, please contact us, and we will provide you with all the information.The Erasmus+ project QUALITY YOUTH MENTORING FOR INCLUSION is cofounded by the European Union.

Partners:

  • Federación Española de Enfermedades Neuromusculares (ASEM)
  • Parent Project aps
  • Rare Diseases Croatia
  • Cyprus Alliance for Rare Disorders

Fundación Isabel Gemio holds a new multiplier event in the Representation of the European Commission in Spain’s venue to present the Erasmus+ project THE VALUE OF FACING SCHOOL

Madrid,  January 30th 2024. Fundación Isabel Gemio has organized a new multiplier event for the Erasmus+ project THE VALUE OF FACING SCHOOL, in Madrid. The Director of the Representation of the European Commission (EC) in Spain, Mr. Lucas Gonzalez Ojeda, welcomed the attendees and outlined the objectives set by the European Union in the field of education.

During the first part, the team from Fundación Isabel Gemio highlighted the social challenge posed by rare diseases, with over 30 million affected individuals in the European Union. María Romo, Director of Fundación Isabel Gemio, emphasized the need to collaborate and create synergies among all social actors to address and find solutions to these pathologies.

Behind the numbers and statistics, there are whole individuals and families who must overcome numerous difficulties in their daily lives. The Erasmus+ project THE VALUE OF FACING SCHOOL is born with the aim of helping these families in the school enrolment process, which sometimes becomes a race full of obstacles. The methodological guide and educational resources are already available on the project’s website. We invite you to visit the page and discover the techniques and activities designed for educational professionals, students, and family members, with the aim of improving inclusion and accessibility in classrooms.


In the second part, we had the testimonies of Begoña Martín, director of Federación ASEM, and Carolina Juzdado, a student of three university degrees and affected by Friedreich’s Ataxia. Begoña explained the challenges she had to overcome during her son Ismael’s schooling process, affected by Duchenne muscular dystrophy, and highlighted that trust and respect are fundamental values in the relationship with educational institutions. On the other hand, Carolina spoke about the physical barriers she encountered in classrooms and encouraged everyone to work towards inclusion. The event ended with a round of questions addressing new avenues for collaboration and joint work in the educational context.

We want to thank the Representation of the European Commission in Spain and Mr. Lucas Gonzalez Ojeda for their collaboration and for providing us with the space to hold the event. To Begoña Martín and Carolina Juzdado for sharing their testimonies and supporting our project. Likewise, we want to thank all the attendees for joining us and for their interest in our initiative. Thank you very much!

The Erasmus+ project THE VALUE OF FACING SCHOOL is co-funded by the European Union and has the collaboration of:

  • Federación ASEM
  • Universidade de Évora
  • French Fondation Maladies Rares
  • UNIAMO
  • Parent Project APS
  • CEIP Clara Campoamor de Málaga

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

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

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

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

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’

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

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.