IGA celebrates 30th anniversary in 2024
The organisation that is now the IGA was founded in Trieste, Italy in 1994. The International Gaucher Alliance will be marking 30 years of serving Gaucher patients worldwide with a series of events during 2024.
Throughout the year, we will be inviting patients and their families to reﬂect on what the IGA has meant to them and how Gaucher
advocacy and the approach to the disease has changed in the past 30 years.
We will be creating videos, including an online discussion featuring people who have been on this journey with us, and we will mark the milestone during our Biennial Members Meeting in Lisbon, Portugal in November. The anniversary will also be the theme of International Gaucher Day.
Tanya Collin-Histed, CEO of the IGA, said: “Over the last 30 years we have grown from a small group of patient advocates to an international charity with the reputation as the go-to organisation for Gaucher disease. We are patient-led and proud to represent patients and their families from
across the globe. Although today, for many patients and their families the diagnostic journey, access to clinical and social care and treatment has improved and patients have better outcomes, far too many patients are still struggling with basic disease awareness and access to diagnostic services and support. We’ve come a long way but we still have many mountains to climb to ensure equity for all”.
Jeremy Manuel, Honorary President of the IGA and one of the people at the founding meeting said: “The inspired initiative of Professors Aerts and Cox (Chair and Vice Chair respectively) in inviting patient groups to participate in the ﬁrst Workshop of the European Working Group in Trieste in October 1994 not only set the tone for decades of close collaboration but laid the foundations of global Gaucher patient advocacy.
“A handful of patient group representatives, sitting in the back row of a small lecture theatre, witnessing Gaucher leaders sharing data, research and treatment methods, was eye opening and exciting in equal measure. The fact that these experts, many of whom still lead the research and therapeutic agenda, also wanted to hear what patient representatives had to say was overwhelming and provoked us to take on the challenges facing Gaucher patients beyond national boundaries.
Jeremy continued: “Sharing experiences with other patient leaders, we learned of common issues and unique challenges. We had witnessed scientists and clinicians working collaboratively, we understood that pharmaceutical companies were global, we recognised that we too needed to speak in a united European and subsequently Global Voice. So, the EGA was born. As the years passed, we became more structured, attracted increasing numbers of member groups and expanded our reach, but I am so proud that the essence of collaboration and mutual support remains as strong as it was that day in Trieste when the IGA was born 30 years ago.”
Fern Torquati, the President of the Italian patient organisation, who was also one of the founders said: “It’s impossible to forget that day in Trieste 1994 when 11 representatives and friends got together to decide to work in favour of Gaucher patients throughout the world. We wanted to help patients receive treatment as soon as possible. There was nothing formal, it was just a group of friends working together to help others. We cared, we really did and still do. In time it was decided to formalize this group of friends and the European Gaucher Alliance was oﬃcially established – and later it went global, becoming the International Gaucher Alliance. Some of our friends from the meeting in Trieste are no longer with us, though we carry them in our hearts forever: Susan Lewis, Ria Guijt and Ghislaine Surrell.”
Please visit our website at www.gaucheralliance.org throughout 2024 for more information about the celebrations and how you can take part.
About the IGA
The IGA is a patient led international organisation that has become the ‘go to’ global voice for over 90% of the Gaucher community and has built its reputation through listening to and delivering outcomes that have impacted on patients and their carers’ lives.
Our vision is a world where all Gaucher patients have access to the treatment and care they need and there is the possibility of a cure.
Please contact our Communications and Campaigns Oﬃcer Harry Albright (email@example.com) with any queries or if you need more information.
About Gaucher disease
Gaucher disease is a rare inherited (genetic), enzyme deﬁciency disorder. Symptoms range from mild to severe and can appear at any time, from infancy to old age. They may include anaemia (low haemoglobin), tiredness (fatigue), easy bruising and a tendency to bleed. An enlarged spleen and liver with a protruding stomach may also occur as well as bone pain, loss of bone strength and density with an increased risk of fractures. People with Gaucher disease lack suﬃcient activity of an enzyme called glucocerebrosidase. This enzyme helps the body to break down worn-out cells and as a result, a fatty substance called glucocerebroside accumulates usually in the spleen, liver, bone marrow, rarely in the lungs and in some types of Gaucher disease in the central nervous system.