Website: http://www.sgsfoundation.org
Finances:
Objects:
the objects of the cio are: to preserve and protect the good health of children with schinzel-giedion syndrome for the public benefit by:-· raising awareness of schinzel-giedion syndrome through the creation of information resources designed for the scientific and medical communities and also for families, available internationally;· encouraging and facilitating research into the underlying causes and potential therapies for schinzel-giedion syndrome, through creation of an international patient registry and through development of links with relevant international research organisations;·improving access to published scientific information about schinzel-giedion syndrome and the health issues affecting children with schinzel-giedion syndrome, curated in an understandable way and available on the schinzel-giedion syndrome foundation’s website, for families internationally; and·to support research initiatives and to support children with schinzel-giedion syndrome and their families, internationally. nothing in this constitution shall authorise an application of the property of the cio for the purposes which are not charitable in accordance with section 7 of the charities and trustee investment (scotland) act 2005 and section 2 of the charities act (northern ireland) 2008.
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