Since 2017, OT4B and patient associations have joined forces and are working together towards the common goal of providing the first early treatment for patients with Prader-Willi syndrome.
A close relationship with patient organisations
Prader-Willi France
Over the years, the Prader-Willi France association has played a fundamental role in supporting and financing academic research, and in particular the work of Professor Maithé Tauber at the Toulouse University Hospital. This community mobilisation has become essential under the impetus of François Besnier, co-founder of Prader-Willi France in 1996 and President from 2009 to 2019. It was in fact while he was seeking to obtain additional funding to develop a drug for people with Prader-Willi syndrome that François Besnier decided to create the start-up OT4B in 2017, with the scientific support of Professor Maithé Tauber, following the encouraging results achieved in the phase II clinical study OTBB2.
OT4B and Prader-Willi France are working together to improve and develop the treatment of patients suffering from the syndrome.
International organisations: IPWSO and FPWR
OT4B actively supports the IPWSO (International Prader-Willi Syndrome Organisation) and the FPWR (Foundation for Prader-Willi Research), two associations that are heavily involved in scientific research on Prader-Willi syndrome and that share with us their patient experience, an essential factor in developing a global understanding of the syndrome.
In particular, OT4B supports IPWSO’s free diagnostic testing programme. This programme is aimed at families from countries where genetic diagnostic tests are not currently available locally. IPWSO has been running this project since 2003 and to date has funded over 500 tests received from 47 different countries.
Patient stories
Zoé
« On 26 February 2010, both Zoé and Prader-Willi Syndrome entered our lives. We had to adapt very quickly to this very special little human.
When she was born, Zoé had very severe hypotonia, which prevented her from moving, communicating and feeding. (…) »
Lilou
« Lilou slept so much … She barely moved … (…)
It was incredibly difficult for her to take in even 2 ml of milk from a bottle.
Three months after coming into the world, Lilou finally went home with me, not because she was drinking enough, but because she was able to receive home care, with her nasogastric tube still in place… »