IGA Blog

My first IGA Board meeting

Sara Khan

My name is Sara Khan, I have Gaucher disease Type 3.

On the weekend of the 15^th and 16^th January 2022 I attended my first ever Board meeting for the International Gaucher Alliance.

First of I would just like to say that the emotional and mental support I received was very empathetic towards me.

The International Gaucher Alliance assisted me with upmost diligence and care to support my physical, mental and emotional difficulties.

All information was communicated efficiently, and was simplified for my personal understanding.

When I arrived at Heathrow airport, I was very overwhelmed. However Tanya-Collin Histed put me straight at ease; moreover it was refreshing to see a familiar face. Although I am a confident flyer, I was apprehensive as to how I would find the correct seat number and so on because I struggle to concentrate in a closed and intense environment due to my condition.

Prior to the official board meeting on Saturday, I got the opportunity to informally introduce myself to the board as a patient with Type 3 Gaucher Disease and the opportunity to share my lived experiences of living with Type 3 and the effects it has impacted on my life all while understanding and appreciating the lived experiences of their lives of living with non-neuropathic Gaucher disease.

I felt very welcomed and supported throughout and any difficulties that I experienced were quickly resolved with the support of Khrystian, Bilijiana, Tanya, Vesna, Suyog, Irena, Aviva and Harry.

All board members were very inclusive and I was able to understand the information that was provided to me about how the International Gaucher Alliance operates at both strategic and operational levels within the organisation. 

I would just like to finish by saying overall my time in Serbia was very enjoyable and it was an absolute pleasure to spend time with a group of people that, no matter that we live in different parts of the world, we are all part of one rare family and together we will conquer.