Thank you

This week, we were informed that the Rt Hon Dawn Primarolo, Minister of State for Health approved funding for:

- a nationally commissioned service for PNH patients –at King’s College Hospital and Leeds Infirmary

- funding of Eculizumab for those patients who clinically need it.

The funding will begin from April 2009.

We would like to thank all our friends who supported the PNH patient group and helped any way they could. All the people out there who came by to read this blog, signed our petition, wrote to their MPs and the Department of Health, spread the word and let us know we weren’t alone. All the doctors and nurses who have taken care of us and kept us going. All the people whose research resulted in this drug. The NCGs and our government who made this difficult decision.

We get to keep our lives. It’s very hard to express into words what the decision and the enormous amount of support we received means to me. All I can do is thank you from the bottom of my heart.