On Wednesday, 14th May, we are delighted to announce that The Rt Hon. the Lord Naseby PC will be hosting an awareness-raising event for policymakers on behalf of the Prader-Willi Syndrome Association UK (PWSA UK) and the Foundation for Prader-Willi Research UK (FPWR UK).
The aim of this meeting is to bring together policymakers, healthcare professionals, and advocates to discuss the challenges faced by those living with PWS and explore ways to improve their quality of life. This is the first time there has been an event like this for Prader-Willi Syndrome and an important opportunity to highlight PWS and the challenges it brings.
It’s crucial for policymakers to understand PWS and the impact it has upon those with the condition and those who care for them. The more they know, the more likely they are to fund research, provide better support services, and approve new treatments when they become available.
How You Can Help
Your support in inviting your local MP to this event would be greatly appreciated. Being notified of and invited to this event by one of their constituents will have the most impact. By encouraging their attendance, you can help ensure that the voices of those affected by PWS are heard at the highest levels of government.
What Do You Need to Do?
Find Out the Details of Your Local MP: You can search for the contact details of your local MP by following this link https://members.parliament.uk/members/commons and by entering their name or your postcode.
Use the Provided Letter Template: Click here to download the pre-drafted letter and add or amend your details and the details of your MP.
Send the Invitation: You can either print the letter and post it or send it via email to your local MP.
Notify Us: Let us know once you have sent the invitation and the name of your MP. This will allow us to track which MPs have been invited. If you’re sending the invitation via email, please Cc us at info@pwsstrongertogether.co.uk to ensure we’re included in the correspondence.
Your support in this matter will be extremely valuable, and we greatly appreciate your time. Together, we can make a difference in the lives of those living with Prader-Willi Syndrome
Letter template can also be found via this link: https://bit.ly/HoLlettertemplate