An alert from Hereditary Alliance UK cautioned us about the prospective effect of brand-new legislation called the Down Syndrome Act.

It raised the possibility of individuals with Down syndrome being dealt with much better than others with comparable knowing troubles, triggered by other condtions such as WAGR.

Following this, we and many individuals who understand somebody with WAGR wished to air issues about it in an assessment run by Departmetn for Health and Social Care (DHSC).

The act will see assistance produced about supporting individuals with Down syndrome covering:

• National Health Service
• social care
• education and youth angering
• real estate

The crucial issue is that if the assistance does not catch all of the overlaps in requirements that individuals with Down syndrome have with individuals who have other conditions such as WAGR 11p removal syndrome, then a hierarchy of gain access to might be produced, to currently rarely readily available services.

We passed these information on to the International WAGR Syndrome Association (IWSA). They and a number of other companies voiced concerns:

” Why single out the Down Syndrome for these enhancements, when lots of other conditions have comparable requirements and those people definitely are worthy of the very same?”

The UK federal government asked for input through a require proof to assist prepare the assistance. Anybody, such as UK loved ones of and grownups with WAGR, might assist prevent them being disadvantaged by utilizing this to make their views understood. IWSA motivated their members to do this and likewise sent out in their own submission revealing their issues.

Trustee Andy composed an action on behalf of Aniridia Network firmly insisting that the assistance should be to deal with individuals with finding out troubles similarly.

Learn More about the Down Syndrome Act and the Hereditary Alliance position declaration.

DHSC are now evaluating the reactions and Hereditary Alliance UK feel there will likely be a public assessment once the draft assistance is all set eventually in 2023. They, Aniridia Network and IWSA will make sure to keep us members upgraded through our newsletters, social networks and site.