| Trustee selection methods | Appointed by resolution Charity Trueteea, having |
Appointed by resolution Charity Trueteea, having |
Appointed by resolution Charity Trueteea, having |
]essed ata properly convened regard to the ekllts, knowledge |
meeting ofthe end sxperienoe |
|
|---|---|---|---|---|---|---|
| required | for the effective | administration ofthe CIO |
||||
| Additional governance issues |
(Optional Information) | |||||
| You ntiy choose to laude additional information, where |
We requite rale In lhe |
all Trvsteee adlrtlniatretlan, |
to undertake DSScheclotj, and totake an active acthNes and eVents ofthe Clo |
|||
| relevant, about: |
||||||
| a | policies and procedures | |||||
| adopted far the induction and |
||||||
| training oftrustees; | ||||||
| ~ | the chartty'a organisation al |
|||||
| structure and any wider | ||||||
| network with which the charity |
||||||
| works; | ||||||
| e | relationship with any related |
|||||
| parties; | ||||||
| ~ | Imstees' consideration of |
|||||
| esPx risks and the system | ||||||
| and procedures to manage thee. |
| Summary ofthe main achhwemettt» ofthe charity durtnl the year |
Summary ofthe main achhwemettt» ofthe charity durtnl the year |
The CIO has continued to spread awareness of MLO through our webslte and family Facebook page. The website isupdated regularly tc reflect Information available, upcoming events and news regarding MLD and therapies available, |
The CIO has continued to spread awareness of MLO through our webslte and family Facebook page. The website isupdated regularly tc reflect Information available, upcoming events and news regarding MLD and therapies available, |
|---|---|---|---|
| The achievements have included: |
|||
| Providing a centprehenslve survey report to NCE on sufFerers afhlLD |
to | ||
| support the appllcatlcn for Gene Therapy, which was successful. |
|||
| Complete updating ofthe website and Information literature follow)ng the |
|||
| NICE decision to provide Gene Therapy for hlLD on the NHS In England. | |||
| Continuing to provide support, both by Zoom meetings and Fun Days for |
|||
| all faeilies affected by MLO, | |||
| Continuing to support ArchAngel MLD Foundation with their application |
tc | ||
| gst MLD put onto the Newborn Screening testing for the UK |
|||
| Further details ofthese and other actlvltles can be found In SecNe C. |