New volunteering scheme, shielding letters and more ...
A brief update from Emma, the Policy and Engagement Manager for Genetic Alliance UK in Wales:
- Emma has been passing on any specific patient queries through the Welsh rare disease implementation group to the Welsh government. If you have any that you want raised please email emma@geneticalliance.org.uk.
- Last week the House Minister announced that thousands more shielding letters would be going out to people so if you’re expecting one and still haven’t received it please let Emma know.
- More conditions have been added to the list so it now includes rare conditions and inborn errors of metabolism that significantly increase the risk of infections like SCID and homozygous sickle cell.
- There is a new volunteer scheme in Wales if you need someone to collect your prescription for you.
- Social Care Wales have produced a helpful guide about managing care staff and direct payments during the Covid-19 crisis.
- 20 people attended the first Genomics Cafe, the next one will be focused on Covid-19 and include talks from a clinician, a researcher and someone from Public Health Wales. More information on this soon.
To get in touch with Emma about an issue affecting you or to share information, please email emma@geneticalliance.org.uk.