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