Professor Anneke Lucassen, University of Oxford
Professor Angus Clarke, Cardiff University
Peter Style (Project Manager), University of Manchester
The ELSI Node invites you to share experiences, cases and insights on the Ethical, Legal & Social Issues (ELSI) surrounding rare conditions.
The ELSI Node is pleased to invite researchers, healthcare professionals, policymakers and patient support groups to share experiences, cases, and insights on the Ethical, Legal, and Social Issues (ELSI) surrounding rare conditions!
Date: Thursday 19th November 2026
Time: 9:00 – 16:00 (GMT)
Location: Glamorgan Building, Cardiff CF10 3NS
Find out more and register here.
Individuals and families living with rare conditions can benefit greatly from the technologies that increase our understanding of genetics as they may, for example, provide a diagnosis or access to clinical trials and new treatments. The Ethical, Legal and Social Implications (ELSI) of genetic testing require attention because some of the results provided by these types of tests are best interpreted by someone who is a specialist in the rare disease in question, and therefore the results are not always clear to other doctors or individuals requesting the tests.
Our Node is the Rare ELSI Node and is a partnership between Manchester, Oxford and Cardiff. We are committed to addressing important issues such as; consent to testing and taking part in clinical trials; living with an undiagnosed rare condition; access to genomic testing; the psychological and social impact of rare conditions; and the design of clinical trials for treatment of rare conditions. We will work with patients, families, communities, clinicians, academics and industry to speed up research and drive innovation in issues ranging from referral pathways to the impact of rare conditions, and the design of clinical trials for treatments of rare conditions.
The ELSI Node invites you to share experiences, cases and insights on the Ethical, Legal & Social Issues (ELSI) surrounding rare conditions.
The ELSI Node is pleased to invite researchers, healthcare professionals, policymakers and patient support groups to share experiences, cases, and insights on the Ethical, Legal, and Social Issues (ELSI) surrounding rare conditions!
Date: Thursday 19th November 2026
Time: 9:00 – 16:00 (GMT)
Location: Glamorgan Building, Cardiff CF10 3NS
Find out more and register here.
Ramona Moldovan is dual trained as a clinical psychologist and genetic counsellor. She is currently senior lecturer at the University of Manchester, UK and continues to hold an affiliation with Babeș-Bolyai University, Romania. Over the last 10 years, Ramona has held numerous international senior leadership positions; she was a co-chair of the Genetic Counselling Division of the European Board of Medical Genetics (EBMG) and co-chair the European Meeting on Psychosocial Aspects of Genetics (EMPAG). Now, she is an elected board member of the European Society of Human Genetics (ESHG), the Capacity Building Lead for the Rare Conditions research theme at the National Institute for Health and Care Research (NIHR), Manchester Biomedical Research Centre (BRC). She is a deputy Director of Manchester Academy for Healthcare Scientist Education (MAHSE) and of the 4Ward North PhD Academy. Her academic, clinical and research activities have been instrumental in setting up unified standard for education, practice and registration in genetic counselling throughout Europe. She is currenly leading national and international consortia focused on Ethical Legal and Social Issues (ELSI) in genomics and rare conditions.
