Show your support by simply watching and sharing the official video of
Rare Disease Day to help bring about change. This is the 6th year of what has
now become an annual event to raise public awareness, and although the idea of Rare Disease Day 2013 is
to inform and educate the general community, it's aims are also to bring these diseases
to the forefront making politicians, researchers and professionals in the
health field pay more attention.
Having a rare disease is very isolating for the patient and family.
Often there are no support groups, and no cure or even treatment available. I
guess the cruel reality is, that it is not cost effective to the pharmaceutical
companies to spend millions on new medications for a rare disease that has a
relatively small number of sufferers. I know only too well, for I was born with
Gaucher disease, a genetic rare disorder that until 21 years ago, there was no
treatment available at all. Thanks to a very special Professor, who made Gaucher
disease his life's work, the first Gaucher clinic was opened, and a Gaucher
Association was created to offer support and help to fellow sufferers and their
families. My husband and I were part of this initial committee that helped
found what today is a successful group. Our numbers were small to start with,
but as word began to spread, other sufferers started to emerge out of the
woodwork and today there are hundreds of patients and their families who have
gained from the keen dedication of a marvellous Professor and the drive and
determination of an amazing Chairlady who created the Association. Together in
numbers we are strong and have a voice.
Elaine, I cannot express enough how remarkable I believe you are and what a gift others are given when you share your messages. I know you have heard from me that my father had Parkinson's disease, my maternal grandmother suffered from a Parkinson's plus disease (also known as an Multiply System Atrophy), and I had a great uncle, who had Parkinson's disease. When someone has been diagnosed with a rare disease, or has a loved one who has experienced the struggles that are faced with a rare disease, it changes everyone involved in ways no one can imagine. I began a journey into advocacy, so that I, too, can share my voice in the battle to find cures for these diseases and create awareness. I thank you and share my support.
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