Dear friends of TSR, I'm reaching out to you in the hope you can support my family and I with a campaign currently underway. I have the support of the mod team to share this with you.
My two daughters both have a condition called PKU (Link) and are unable to metabolise protein. They're on a very strictly controlled diet to avoid serious health complications and, as I'm sure you can imagine, this limits their (and our) quality of life. There is a campaign underway to get PKU sufferers a treatment that could significantly improve their quality of life. This treatment (Kuvan) has been available through other European state healthcare systems for over 10 years.
If you would be willing to support us, could I ask that you sign the petition and share this with your friends and family?:
petition.parliament.uk
I appreciate that not all of you are in the UK but perhaps you know friends or family that are that you can share this with. Below is a link to a Daily Express article that contains more information if you wish to know more:
www.express.co.uk
Thank you for taking the time to read this.
Kind Regards,
Chris, Lily (5) and Isla (3)
My two daughters both have a condition called PKU (Link) and are unable to metabolise protein. They're on a very strictly controlled diet to avoid serious health complications and, as I'm sure you can imagine, this limits their (and our) quality of life. There is a campaign underway to get PKU sufferers a treatment that could significantly improve their quality of life. This treatment (Kuvan) has been available through other European state healthcare systems for over 10 years.
If you would be willing to support us, could I ask that you sign the petition and share this with your friends and family?:
Petition: Fund Kuvan (sapropterin) on the NHS for people with PKU
The drug Kuvan allows people with the rare condition PKU to manage their condition. The treatment has been licensed for 11 years but has never been commissioned by the NHS. The government should make funding available for this treatment for all PKU patients that could benefit.
petition.parliament.uk
I appreciate that not all of you are in the UK but perhaps you know friends or family that are that you can share this with. Below is a link to a Daily Express article that contains more information if you wish to know more:
Back our campaign to get miracle drug on the NHS for PKU sufferers
THE DAILY Express today urges our loyal readers to back a life-changing petition - to secure a miracle drug for PKU sufferers on the NHS.
www.express.co.uk
Thank you for taking the time to read this.
Kind Regards,
Chris, Lily (5) and Isla (3)
