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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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The website ldnz.org.nz had the following in the site, "What are lysosomal storage diseases? Lysosomal storage diseases are inherited genetic defects that result in an enzyme deficiency, which prevents cells from performing their natural recycling function." I viewed that the webpage stated " This leads to a variety of progressive physical andor mental deterioration." They also said " Approximately 180 New Zealand families are currently affected. Campaign for access to therapies for our diseases. 28th February 2017 - Pharma Company gives up on Pharmac. Rare Disease Epidemiology - 2nd Edition."ANALYZE SUBSEQUENT WEB SITES
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