Yesterday, QED met with Helen Carter to hear about her daughter Hollie, who suffers from Niemann Pick Type C. QED are proud to support this cause. There is Hope for Hollie
One thing that stood out for us from the information that she kindly shared with us was that since Hollie went through her long, difficult and invasive diagnosis, 2 more children have been diagnosed with Niemann Pick Disease by Milton Keynes General since their awareness of the disease was effectively created by Hollie’s case. It was encouraging to us all to meet with and hear from someone who has first hand experience of dealing with a rare disease and through her strength and determination, and that of others like her, we can hopefully not only raise awareness of such disorders, but make sure they have a place at the table for Clinical Research and ultimately ensure that children like Hollie can live to see their adult years with some degree of normality.
QED are proud to support this cause. There is Hope for Hollie
OrphanReach with QED as the global clinical development partner enables sponsors to do what is really important: REACH rare disease patients, no matter where in the world: