International Gaucher Alliance celebrates 30 years of international patient advocacy
The annual International Gaucher Day (IGD) celebrations will be taking place on Tuesday 1 October.
IGD will take place online and aims to increase awareness of this ultra-rare disease, the challenges faced by patients and families in obtaining timely diagnoses, and the efforts being made to secure treatment through the IGA’s Humanitarian Aid Programme.
This year marks the International Gaucher Alliance’s 30th anniversary, and on IGD this year we will be premiering a video in which 16 people from different parts of the world speak about their involvement with the IGA and what the organisation means to them. This is in addition to a longer video launched earlier this month, a “Fireside Chat” in which three people who were involved from the start discuss the history of the IGA and its impact on the world of patient advocacy.
On 1 October, we will launch a social media campaign using shorter videos by the 16 people who contributed to the video that will premiere on the day. These videos, as well as other information about IGD, can be found on our dedicated web page.
This year also marks the launch of the IGA’s first annual IGD Lecture. This lecture will be given on 1 October each year and will cover topics of general interest to the Gaucher community. The inaugural lecture will be given by Prof. Derralynn Hughes, who will speak about her recollections of the past 30 years, with a look to the future and what still remains a challenge.
IGA CEO Tanya Collin-Histed said, “On this our 30th anniversary, I am excited by our plans to mark International Gaucher Day, and I look forward to celebrating our achievements with the worldwide Gaucher community.”
About International Gaucher Alliance
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.
Founded in 1994, the International Gaucher Alliance has been at the forefront of advocating for Gaucher community worldwide.
To date they have 58 member associations representing 54 countries throughout the world.
Media Contact
Harry Albright
