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.

Follow us on social media and don’t miss anything!

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”.

Second transnational meeting of the Erasmus+ THE VALUE OF FACING SCHOOL

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On January 23rd, 2023, we held in Barcelona the 2nd transnational meeting of the Erasmus+ THE VALUE OF FACING SCHOOL. The partnership met to analyse the development of the intellectual outputs and to plan the following dissemination and evaluation activities of the project.

During the meeting, Fundación Isabel Gemio and Universidade de Évora presented the progress they have made with the methodological guide INCLUSION AND EQUITY IN SCHOOL. Some of the learning inclusive methodologies that this intellectual output will explain are learning through project and universal learning design and gamification. In order to offer a general overview of topics such as inclusivity and accessibility, the partnership will also portrait the legal framework for parental participation in inclusive education.

In the second half of the meeting, every entity described the Open Educational Resources they have developed. This second intellectual output of the project will include, questionnaires, books, list of recommendations, role-plays, and many other activities that will help teachers, students, and parents to enhance the environment of the classroom and to get the most out of blended learning.

All the intellectual outputs and the activities carried out by the Erasmus+ project THE VALUE OF FACING SCHOOL, co-funded by the European Union, will be available on the web platform of the project, that will be available soon. Follow us on social media and don’t miss anything.

Fourth and final 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 held its 4th and final transnational meeting in Barcelona on January 23rd. The partnership discussed the results and analysed the all the activities carried out within the project.

The initiative YOUTH WITH COURAGE has shared a total of 28 videos with the testimonies of young people affected by rare diseases and muscular dystrophies. Fundación Isabel Gemio, as coordinator of the Project, presented the final report analysing the impact on social media. The videos got more than 10k views in total on the different social media profiles of the initiative YOUTH WITH COURAGE (Instagram, Youtube, Facebook and Twitter). Besides, all the posts related to the project amounted to more than 9k impressions.

From the evaluation questionnaire developed by the partnership to analyse the impact of the project we have drawn the following conclusions:

  • All the respondents agree that this kind of initiatives benefits people suffering from rare diseases. They also affirm that they have learnt values such as courage and empathy, the importance of research and how to overcome difficulties while watching the videos.
  • As to the question concerning inclusiveness, they point out that it is important to carried out similar initiatives to YOUTH WITH COURAGE to continue raising awareness among society. Also, they consider that it is necessary to increase the funding and training of society regarding rare diseases.

During the meeting, it was agreed to prepare a 2nd newsletter to inform organizations and institutions of the results of the second half of the project. It was also agreed to gather all the information of the project in a brief guide that will be available soon.

All the organizations involved in the project (Fundación Isabel Gemio, Federación ASEM, UNIAMO, Parent Project APS y CMT-France) would like to thank the protagonists of the initiative YOUTH WITH COURAGE for their willingness and collaboration. During these months, we have learned about their lives, their diseases, their friends and families, their biggest obstacles and their biggest dreams. Moreover, they have set an example to young people and society with their value to face life. We would also like to thank Perez Llorca law firm for welcoming us and for their amiability, and all the people that have supported us in the different stages of the project.

Ultimately, the partnership concluded that the project has been a very positive and enriching experience for all the organizations, and it committed to continue working as a team in similar initiatives. The project YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE is co-funded by the Erasmus+ programme of the European Union.

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)