Age 30 years...'too old for treatment?'
My name is Laura de Graaff, MD, PhD (or simply ‘Dr. Laura’, for my patients), and I am endocrinologist at the Erasmus Medical Center in Rotterdam. I have launched a clinic for adults with rare genetic syndromes. In this clinic, I take care of 130 adults with Prader-Willi syndrome (PWS).
Growth Hormone (GH) has changed the lives of many children with PWS and many of them have grown up to become healthy young adults. Thanks to research by the Dutch Growth Research Foundation, GH treatment is available for children and young adults with PWS. Unfortunately, for older adults (30 years and up) GH treatment is not available. Studies in adults are urgently needed to change this. Therefore, together with my adult PWS-team of the Erasmus Medical Center, I want to start a study on the effect of growth hormone treatment in a large group of older adults with PWS. PWS is a rare disorder and therefore it’s not easy to set up a study that is large enough to get convincing results. Read more about the study here.
Therefore, I have asked my colleagues, adult endocrinologists from many countries, to join hands. Together we have launched INfoRMEd-PWS (International Network for Research, Management and Education on adults with PWS), a network of adult endocrinologists from Belgium, France, Spain, Italy, Sweden, the United Kingdom, Australia and the United States.
The American Foundation for PWS research will give support for the GH study with a large amount of money, but we still need the last 100.000 euro to complete the budget (‘close the gap’) and get started!
If we don’t close the gap, we can not start the study.
The study is very important. Many adults with PWS are eagerly waiting to start the study. It’s very hard to explain that they can not get the treatment because of their age.
Therefore we ask your help! Our network of colleagues and (friends of) friends includes 10.000 people.
If we all donate 10 euro, that is already enough to help many adults with PWS.
Or transfer your donation to BIC: INGB NL2A IBAN: NL62 INGB 0009 56 42 68
We need you to make GH treatment available for all adults with PWS.