Courage to Shine™


The Association for the Bladder Exstrophy Community (ABC) for the first time has become a partner for World Rare Disease Day in the USA.


For more information click on the fliers below are go to

Rare Disease Day        RDD_partner (1)        Rare Diseae Day 2013 - Frequently Asked Questions

Bladder Exstrophy is one of about 7,000 rare diseases listed by NORD (National Organization for Rare Disorders)

World Rare Disease Day – 2012 Official Video

For Rare Disease Day Events in your area please click here

If you live near Pittsburgh, Pennsylvania:

Thomas Exler, President of the Association for the Bladder Exstrophy Community (ABC) will be speaking at a World Rare Disease Day event on February 28, 2013

Jamie’s Dream Team / The Global Genes Project / RARE Meetup for World RARE disease Day

Thursday February 28 2013

St. Raphael’s School’s – Multi-Purpose Room

1154 Chislett…

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Born in Liverpool at the end of WW2, but raised in Skelmersdale. I first studied art in Southport from 1960-63 and worked in graphic design till I married. In December 1969 I moved to Zambia with my husband and two young children. There I taught art in the local girls school, illustrated for the National Correspondence College and did all sorts of other artwork, paid and unpaid. In 1978 I divorced and remarried in the summer of 1980. In 1985 I became ill and the following year cancer was diagnosed. There was no treatment available in Zambia and so I had to go to the UK. After recovering from a radium needle implant I went back to Zambia, but 18 months later the cancer recurred and it was off to the UK again for radical surgery. This time I realised I must stay in the UK where treatment was available, so I never returned to Zambia nor my husband. A few months later I applied for a degree course, but two years later the disease metastasised and I spent most of my final year in and out of hospital. It’s been a long hard road, but I’m still plodding on and it is now 24 years since my last cancer treatment. Because of my experience of cancer and surviving against the odds, I try and help others cope with their devastating diagnosis and prognosis.

2 thoughts on “”

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?





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