The people behind the IGA
The International Gaucher Alliance is a patient-led organisation working with the Gaucher community around the world.
Our staff team manages the day-to-day work of the IGA, while our Board provides governance and strategic leadership.
Our team works across the IGA’s programmes, operations and development, helping to connect people and organisations across the global Gaucher community.
Chief Executive Officer
IGA Developmental Programme
Operations Officer
The IGA Board provides governance and strategic leadership for the organisation.
Board members bring experience and perspectives from across the Gaucher community and different countries.
Interim Chair
Secretary
Treasurer
Honorary President
Director
The staff team manages the IGA’s day-to-day work.
Together with member organisations, volunteers and partners around the world, they help advance the IGA’s mission and support the Gaucher community.
Governance & strategic leadership
Day-to-day delivery
Member organisations, volunteers & partners
The IGA is a registered charity and company limited by guarantee in England and Wales. The Board is responsible for the organisation’s governance and oversight.
Registered Charity Number: 1192011
Company Limited by Guarantee Registered in England & Wales No. 06653373
This website is supported by our funders. The International Gaucher Alliance maintains full editorial independence, and our funders have no influence over the content published on this website.
© 2026 International Gaucher Alliance. All rights reserved.
Chief Executive Officer
IGA Developmental Programme
Operations Officer
Having grown up with a sister diagnosed with Type 3 Gaucher Disease, Skye has a strong personal connection to the rare disease community, and a deep understanding of the impact long-term conditions can have on individuals and families. This experience has shaped her passion for work that improves people’s lives and supports patient-centered care..
Skye is currently studying Psychology at the University of Derby and has experience working within the NHS in both administrative and operational roles. Through her studies and work, she has developed a strong interest in health, wellbeing, and systems that support patients and families. She is pleased to be taking on this role as maternity cover and looks forward to contributing to the organisation’s work and supporting the community.
Interim Chair
Aviva Rosenberg is a health care attorney based in Pennsylvania. She has practiced health law throughout the United States and taught as an adjunct professor at several universities.
Aviva was diagnosed with Gaucher disease at age 27, following 20 years of symptoms with no answers. Her son, Eli, also has Type I Gaucher disease.
Aviva’s passion is educating about genetic diseases and screenings and talking about her personal journey with Gaucher disease, including the need to shorten patients’ diagnostic results.
She lives with her husband and three fabulous boys in Pittsburgh, Pennsylvania and is so excited to be part of the IGA.
Secretary
Patricia Lucki, born in Argentina and currently residing in Guatemala, has lived in several countries, including Israel and El Salvador, and has been based in Guatemala and Central America since 1984. She was diagnosed with Gaucher Type I at the age of 55. Patricia holds a degree in Information Sciences and a master’s in Communications, and she earned her PhD in Sustainable Development. She is a co-founder of the Guatemala National Association of Lysosomal Diseases and contributes to public health initiatives through the Health Commission of the Science and Technology Council. Additionally, she works as a consultant for both public and private institutions in digital transformation and innovation and teaches at a local university.
Treasurer
Doctor in Medicine born in Argentina in 1956 living in Israel since 1969, graduated at the Technion, Faculty of Medicine Haifa, Israel 1985, and Board Certification in Family Medicine,1992, practicing physician in the Public Health System for more than 20 years, vast experience in Medical Administration in Health Services, including quality assessment and quality improvement, graduated at The Hebrew University of Jerusaalem with an EMBA. During 12 years close contact with Gaucher experts and patients associations worldwide. Chairman of the Israel Gaucher Association for 10 years, and co-founder and active member in the directive of the European Gaucher Alliance. Representing the Israeli patients at the European Working Group on Gaucher Disease.
Personal and professional through view of a rare disease as a physician being a parent of a Gaucher patient diagnosed in 1992, which gave him the possibility to better understand and handle the needs of patients and of physicians in the field.
Between 2006 to 2022, working in as Medical Director and after that as VP Medical Affairs in Protalix BioTherapeutics, taking part in the development of new treatments for rare diseases including Gaucher disease and Fabry disease, both drugs approved by the regulatory agencies and in development of treatment for Cystic Fibrosis and Inflammatory Bowel Disease along with other pre-clinical products.
Since June 2024 Chairman of the Israeli Gaucher Association and since November 2024 was approved as a member of the IGA board and Treasurer.
Engaged in improving Gaucher patients’ life and treatment worldwide.
Honorary President
Director
Director
Director
Director
Director
