Gaucher Families Worldwide

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The Gauchers Association is a charity providing information and support to Gauchers patients and their families in the UK and Ireland, writes Susan Lewis. That is our remit. However due to the Association's large website, e-mail and fax facilities, from time to time we receive requests, many heartbreaking, from Gauchers families around the world seeking help.

A little girl has Gauchers disease in Poland: her father asks for advice in finding the money to pay for her treatment. With help from various sources, she is now on Ceredase. Her story is given opposite.

A desperate mother in India has two little boys with severe Gauchers disease: she has sent letters round the world from Hilary Clinton downwards begging for help. The Association went to her assistance but unfortunately help came too late to save the older child who tragically died. Her younger son did receive treatment but then subsequently died from another cause.

A Romanian doctor discovers she has Gauchers disease and medical experts from around the world rally to her support. A student from the Czech Republic worries about his mother who has the disease: we put him in touch with the relevant people in his country. A Malaysian father seeks medical advice: one of our UK doctors gives him a reply.

Our Newsletters, which are displayed on the Internet, are translated into Spanish and are being translated into Russian. Some articles are available in German and Italian. A father from Colombia thanks us for the information he can read in Spanish and gets in touch with the right people. Similarly a father in Brasil sent an e-mail in Portugese. These are just some of the requests for information that come from around the world.

This is not a self-congratulatory article but a statement to show our awareness that there are many people, including perhaps some in the UK and Ireland, who are suffering from symptoms of the disease and may need help.

Statement by Genzyme
Jan Van Heek, President of Genzyme Therapeutics, producers of Ceredase and Cerezyme, expressed his concern for Gauchers patients worldwide during a visit to London in August 1997. He said: 'We at Genzyme continue to find solutions for everyone around the world. However there is no blanket approach. Each case must be assessed individually. We are currently developing programmes to treat patients worldwide and now that Cerezyme is becoming fully available, we are putting extra effort into finding solutions.'

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Source: Gauchers News November 1997; updated August 2001.

© Copyright Gauchers Association 1997