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||Trustee selection methods|Appointed<br>by resolution <br>Charity Trueteea, having|Appointed<br>by resolution <br>Charity Trueteea, having|Appointed<br>by resolution <br>Charity Trueteea, having|]essed ata properly<br>convened<br>regard to the ekllts, knowledge|meeting ofthe<br>end sxperienoe|
|---|---|---|---|---|---|---|
|||required|for the effective||administration<br>ofthe CIO||
|Additional<br>governance<br>issues||(Optional Information)|||||
|You ntiy choose to laude<br>additional<br>information,<br>where||We requite<br>rale In lhe||all Trvsteee <br> adlrtlniatretlan,|to undertake DSScheclotj, and totake an active<br>acthNes and eVents ofthe Clo||
|relevant,<br>about:|||||||
|a|policies and procedures||||||
||adopted far the induction<br>and||||||
||training oftrustees;||||||
|~|the chartty'a organisation<br>al||||||
||structure and any wider||||||
||network<br>with which the charity||||||
||works;||||||
|e|relationship<br>with any related||||||
||parties;||||||
|~|Imstees' consideration<br>of||||||
||esPx risks and the system||||||
||and procedures to manage<br>thee.||||||









|Summary ofthe main<br>achhwemettt»<br>ofthe charity<br>durtnl the year|Summary ofthe main<br>achhwemettt»<br>ofthe charity<br>durtnl the year|The CIO has continued<br>to spread awareness<br>of MLO through our webslte<br>and family Facebook page. The website isupdated<br>regularly tc reflect<br>Information<br>available,<br>upcoming<br>events and news regarding<br>MLD and<br>therapies<br>available,|The CIO has continued<br>to spread awareness<br>of MLO through our webslte<br>and family Facebook page. The website isupdated<br>regularly tc reflect<br>Information<br>available,<br>upcoming<br>events and news regarding<br>MLD and<br>therapies<br>available,|
|---|---|---|---|
|||The achievements<br>have included:||
|||Providing<br>a centprehenslve<br>survey report to NCE on sufFerers afhlLD|to|
|||support the appllcatlcn<br>for Gene Therapy, which was successful.||
|||Complete<br>updating<br>ofthe website and Information<br>literature<br>follow)ng the||
|||NICE decision to provide Gene Therapy for hlLD on the NHS In England.||
|||Continuing<br>to provide support,<br>both by Zoom meetings<br>and Fun Days for||
|||all faeilies affected by MLO,||
|||Continuing<br>to support ArchAngel<br>MLD Foundation<br>with their application|tc|
|||gst MLD put onto the Newborn<br>Screening testing for the UK||
|||Further details ofthese and other actlvltles can be found<br>In SecNe C.||
















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