Ines Alves is the founder and president of ANDO Portugal, the Skeletal Dysplasia National Association as well as the representative of the European Patient Advocacy groups (ePAG) and many other committees.
Here, you can find her experience from participating in the GEMSTONE Mobility project:
“There is something unique in research when is brainstormed and conducted collaboratively. I applied for the 2022 final STSM call in a very short timeline, but I was focus on getting this opportunity and gladly, the application was awarded a STSM grant to conduct a literature search in achondroplasia, a monogenic condition, in Erasmus MC, in Rotterdam, The Netherlands, from the 17th to the 20th of October 2022.
I had the honour in having Fernando Rivadeneira hosting my STSM and Fjorda Koromani as my supervisor and more, as my work colleague. Arriving to Rotterdam was the first step to run the work together with Fjorda at her co-workspace office. From the outside the Erasmus MC building was eye catching but from the inside, was where I could meet new people, PhD students from different countries and so many friendly faces.
To support all the literature search work, I meet Sabrina Meertens-Gunput (SBG), biomedical information specialist from Erasmus MC medical library, who was a key person for my training in literature search methodology and compose the search terms accordingly a proposed literature search protocol I have prepared.
Fjorda and Sabrina were great trainers, always ready to clarify questions and doubts which was very encouraging, allowing me to have great work atmosphere. I had 3 intensive workdays at Erasmus MC, which was very empowering and allowed me to have a clearer vision of the next steps ahead my doctoral research project. I also had the opportunity to visit Fernando Rivadeneira laboratory and enjoy a great conversation time with Fernando and Fjorda in a dinner time along some Vietnamese specialities.
The main goal of this STSM to undertake a deep and comprehensive literature search on diverse aspects related to adults with achondroplasia as the learning objectives were fully achieved. This STSM involved the collaboration of several members of GEMSTONE and can be a statement of collaborative work. This work contributes also to the WG3 work, as achondroplasia is a monogenic condition is essential for the following literature review manuscript, that will be published in an open-source journal to foster a wide access and dissemination of the work within GEMSTONE members, research community and patient organizations, in direct alignment with WG6 objectives. The focus of this doctoral program, part of which was this STSM, can deliver relevant understanding of the phenotype impact and natural history of achondroplasia and ultimately, improve quality of life of people with achondroplasia.
Above all, I deeply thank the STSM committee for this unique opportunity and to foster wide collaboration between GEMSTONE members, professionals, institutions and countries.”
