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

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The partnership of the Erasmus+ QUALITY YOUTH MENTORING FOR INCLUSION met on Tuesday, April 30th, to analyze the progress of the initiative, that will develop a mentoring process for young people affected by Rare Diseases (RD). Find below the most important conclusions of the meeting:

  • The methodological guide will provide training for mentors and mentees that will improve their confidence and self-development.
  • The mentoring process will allow the participants to identify future professional development opportunities and to learn techniques to overcome daily challenges.
  • More than 60 young patients affected by RD will benefit directly from the initiative. The pilot tests will be conducted during the summertime to increase the participation of young people.

Do you want to join us? Contact us and we will guide through all the process. Follow us on social media for more information.

Kick-off meeting of the Erasmus+ EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES

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On Tuesday, April 23rd, we held the kick-off meeting of the Erasmus+ EDUCATIONAL AID KITS IN THE FIELD OF RARE DISEASES (RD). The objectives of this new project are:

  • transform vocational training into a more accessible and inclusive education for people with RD that encourages them to carry out their studies in equity.
  • train future professionals without RD in the care of this target group, avoiding risks and negligence due to lack of knowledge of RD and opening new paths to employability.
  • establish an innovative working strategy between RD experts and VET teachers that allows them to include content related to RD and inclusive methods in their classrooms.

In this new initiative, co-funded by the European Union, and coordinated by Fundación Isabel Gemio, the partnership organizations are Universidade de Évora (Portugal), CESIE ETS (Italy), CMT-France (France) and Federación Española de Enfermedades Neuromusculares (Spain). The partnership will collaborare in the development of the following results:

  • METHODOLOGICAL GUIDE. An extensive guide that will establish mechanisms to promote the creation of more inclusive VET classrooms with RD students, as well as to establish methods to deal with training contents on RD compatible with their teaching curricula and their didactic programming.
  • EDUCATIONAL KITS. Sets of educational materials that allow teachers to use them in their classrooms to enhance the training of mid-level vocational students from the professional families of health and socio-cultural and community services.
  • VIRTUAL COURSE.  For the training of vet teachers in the use of resources and methodology through adapted digital tools.
  • ADVICE AND GUIDANCE SERVICE. A communication tool that will put teachers or professionals with intermediate vocational training studies in contact with experts from various fields in RD so that they can help them with the mechanisms to properly care for patients with RD.

The partnership of the project will meet in Madrid next month to discuss and plan the following steps of the project.

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

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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

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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

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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

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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

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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.