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”.

Alimerka Oviedo Basketball donates €946.50 to the Isabel Gemio Foundation for research into rare diseases and muscular dystrophies 

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Alimerka Oviedo Basketball has managed to raise €946.50 from sales of their special edition game shirts and help from the city. The design, carried out by Marcos García, founder of the Basiliscus & Cía collective, includes the ‘Paisanu’ and Santa María, a profile of the city’s Cathedral, or the facade of the Town Hall.


“I wanted to include the Oviedo skyline with the club’s corporate colors, blue and orange, as well as those of the sacavera, which is a recurring theme in my compositions. The idea came up of making limited edition designs for charity and I thought of the Isabel Gemio Foundation, which investigates muscular dystrophy”, explains García about the shirt.


The proceeds from the sales and also auctions of horseback riding lessons will go to our foundation for the investigation of muscular dystrophies and rare diseases.


Many thanks to Alimerka Oviedo Baloncesto and to all who have contributed!


Without you, it would not be possible.

Fundación Isabel Gemio joins recognizing World Rare Disease Day

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Fundación Isabel Gemio is going to share a series of testimonials from the initiative YOUNG PEOPLE WITH RARE DISEASES: THE COURAGE OF FACING LA VIDA, co-financed by the Erasmus+ program of the European Union for World Day for Rare Diseases, which takes place on the last day of February.

Disseminating and giving visibility to the cases of these young people offers a constant example of improvement, while making society aware of the importance of science and research for these rare diseases. So often people affected with these conditions lack a proper diagnosis or treatment that allows them to live their lives normally.

Over the next few weeks, we will learn the stories of Olivia, Leticia, Cristina, Carolina, Sara, Alicia, and Mónica. Follow us on our networks, share, and join our mission.

Isabel Gemio y Mamen Mendizabal entrevista sobre investigación

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Puedes ver la entrevista en el siguiente enlace: ENTREVISTA EN MAS VALE TARDE

FUENTE: LA SEXTA

https://www.lasexta.com/programas/mas-vale-tarde/entrevistas/isabel-gemio-emocionada-vacunacion-hijo-distrofia-muscular-esta-feliz_2021050360903a185e5adb00010150e6.html

PRENSA: LA RAZÓN

https://www.larazon.es/television/20210504/4n3rpigwsfddvjxqsk2eju7yoa.html