Page 15 - CamRARE | Unique Feet - Impact Report 2022
P. 15

Building knowledge



            Every family interviewed for this report drew attention to the helpful information
            they have had access to through being part of Unique Feet. Being connected to
            other local parents who have had similar experiences raising their children is one
            of the group's key strengths. Parents outlined new information they acquired

            through Unique Feet. This included:


                 admission to schools and school support
                 applying for disability funding

                 better understanding of genetic testing
                 general tips and hints on raising their children


            Beyond the group’s in-person activities, parents keep in touch through a

            WhatsApp group.  Families highlighted the scant information they were given
            after diagnosis by medical professionals. This is why parents highly commended
            the group and the support of CamRARE as “an enormous help” and “invaluable”
            in this regard.





                                    COVID-19 & Beyond


                  We have been proactive in our covid response providing online and in-
                  person safe activities throughout and following.
                  We supported our families through the many challenges of shielding and
                  vaccinations.


             In response to challenges during COVID, we have developed a rare patient

             passport with the help of Unique Feet families, which has resulted in a pilot
             study and report being developed.
   10   11   12   13   14   15   16   17   18   19   20