Fundación Isabel Gemio joins recognizing World Rare Disease Day

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.

Juan Valderrama collaborates again with Fundación Isabel Gemio

On March 28, Juan Valderrama will recite the Diván del Tamarit poems at the Teatro Real in Madrid, coinciding with the 125th anniversary of the recital of poet Federico García Lorca. Valderrama also brings the great singer-songwriter from Granada, Carlos Cano, who puts music to poetic works in a masterful way, contributing his personality and experience in mixing musical traditions with new trends of the 21st century.

This unique and unreplicable concert will also host artists such as Ana Belén, Carmen Linares, Miguel Poveda, Diana Navarro, and Antonio Reyes.

Part of the proceeds will go to financing the research lines of the Fundación Isabel Gemio that seeks solutions to rare diseases and other muscular dystrophies.

Get your tickets at the following link.

Enjoy an unforgettable night and join a good cause!

Farmaindustria proposes twelve measures to improve access to new treatments for patients with rare diseases

Improving access to new treatments for Spanish patients with rare diseases is an ever pressing issue. For this reason, Farmaindustria has launched Propuestas para la mejora del acceso de los pacientes a los medicamentos huérfanos. This new document proposes 12 specific measures to ensure that Spanish patients with rare diseases have the maximum amount of opportunities available for treatment, in line with those of other European countries. Already in 2022, the pharmaceutical industry proposed about twenty measures to improve access to new drugs.

“Patients with rare diseases cannot wait to have all the evidence to finance a medicine that already has a European authorization with a favorable benefit-risk balance,” says the director of Farmaindustria’s Access Department, Isabel Pineros. “The pharmaceutical industry is willing to take some of the risk involved in evaluating and financing orphan drugs. It is time to assume that these drugs cannot be tested as those indicated for frequent pathologies ”, she adds.

To speed up the arrival of these drugs the industry has proposed that an early dialogue be established with the Administration once the drug has received a favorable report from the EMA. It is then crucial to speed up procedures so that the evaluation and financing do not exceed three months and the therapeutic positioning reports do not exceed 60 days.

SOURCE: Farmaindustria

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

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.