Expert reviewer of Medicines Overviews (previous EPARs) and Plain Lay Summaries

BOND ERN is the Rare Bone Diseases European Reference Network, currently formed by 87 healthcare professionals, from 38 healthcare providers from 8 countries. I´m a member of the Steering Committee and member of 6 working groups in BOND: Diagnosis, Research, Clinical Trials, Guidelines, Natural history Pathways and Education in which I collaborate with the expert clinicians involved in the network in order to strengthen the patient-centered vision in all this project. I represent patients and… Show more BOND ERN is the Rare Bone Diseases European Reference Network, currently formed by 87 healthcare professionals, from 38 healthcare providers from 8 countries. I´m a member of the Steering Committee and member of 6 working groups in BOND: Diagnosis, Research, Clinical Trials, Guidelines, Natural history Pathways and Education in which I collaborate with the expert clinicians involved in the network in order to strengthen the patient-centered vision in all this project. I represent patients and organizations from 436 rare bone conditions, from across Europe. I have presented several times BOND in diverse events including in thematic events at the European Parliament Show less

ANDO Portugal is the National Patient Organization for Skeletal Dysplasia, supporting patients and families with rare bone conditions. I founded ANDO in 2015 and in these last 5 years, our work has focused on developing studies and research of these conditions, creating information in Portuguese and organizing national meetings with patients, families, clinicians, and researchers to increase knowledge and build active communication among all. And has a broad national and international scope of… Show more ANDO Portugal is the National Patient Organization for Skeletal Dysplasia, supporting patients and families with rare bone conditions. I founded ANDO in 2015 and in these last 5 years, our work has focused on developing studies and research of these conditions, creating information in Portuguese and organizing national meetings with patients, families, clinicians, and researchers to increase knowledge and build active communication among all. And has a broad national and international scope of action with relevant contacts at diverse levels. Show less

Patient Opinion Leader and Expert in achondroplasia. Beyond Achondroplasia is a hub for Rare Diseases, with the most updated and relevant information related to achondroplasia, a skeletal dysplasia. Themes as scientific research, clinical trials, medical follow-up, guidelines, clinical reference centers are key subjects. Since 2013, the website had more than 1,5 million views from 200 countries. Using my scientific knowledge and patient advocate expertise, I created Beyond Achondroplasia and… Show more Patient Opinion Leader and Expert in achondroplasia. Beyond Achondroplasia is a hub for Rare Diseases, with the most updated and relevant information related to achondroplasia, a skeletal dysplasia. Themes as scientific research, clinical trials, medical follow-up, guidelines, clinical reference centers are key subjects. Since 2013, the website had more than 1,5 million views from 200 countries. Using my scientific knowledge and patient advocate expertise, I created Beyond Achondroplasia and I´ve been running it by myself in a volunteer commitment. Show less

EUPATI Fellow and Vice President of EUPATI Portugal. With the EUPATI training course, I added more competences on medicines development, clinical trials, medicines regulations, and health technology assessment. I´m frequently invited to speak at national and international events regarding patient empowerment and engagement in the R&D and I have been actively collaborating with Pharma and CRO´s in the last years as an expert consultant in achondroplasia and rare diseases.EUPATI is the… Show more EUPATI Fellow and Vice President of EUPATI Portugal. With the EUPATI training course, I added more competences on medicines development, clinical trials, medicines regulations, and health technology assessment. I´m frequently invited to speak at national and international events regarding patient empowerment and engagement in the R&D and I have been actively collaborating with Pharma and CRO´s in the last years as an expert consultant in achondroplasia and rare diseases.EUPATI is the European Patients’ Academy, a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organizations. Show less