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Benjamin Siedman had Sanfilippo Syndrome, a rare and fatal inherited genetic disorder. Ben and thousands of children like him have a life expectancy between 12 and 20 years. There is no treatment, no cure . That is why we created the Sanfilippo Research Foundation. We are in the process of updating our website - please visit our Facebook page.
A Global Program of Awareness and Inspiration Featuring Works of Art by the Lysosomal Storage Disorder Community. View patient videos and download eBook. My mother is the one that loves me most in the world. Hold on to good things. This expression is my dream of playing, running, jumping and enjoying like any other child but I am not able to. 487 people worldwide have united in expressing their hope.
A global network of non-profit organisations supporting those affected by Niemann-Pick Diseases.
Living with a rare disease. What is a rare disease? Communicating with your GP. Stories from around the world. NZORD and the Minister of Health.
Ldquo;The ultimate challenge in life is to maintain the quality of. Our lives within the narrrow window of survival we are granted. John Smith, Lung Cancer Survivor.
Just over a year ago I fell and broke my leg. I have still not fully recovered. After the surgeon put me back together again, he warned me it would take a least a year to completely heal.
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LDO Group is the total service provider to the Australian and International coal mining industry. We have the management expertise, experienced operators. The mining industry needs to get any job done. No project is too challenging. Our expertise lies in developing any underground. Mining project from inception to full production. We thrive on the challenge of developing greenfield. Sites, another LDO specialist area. LDO has built a solid reputation as the innovative mining specialists.
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