Lifesavers who are standing up for creating access to lifesaving information and treatments for everyone are making their voices heard. Meet the Champions, listen to their story and follow their example!
I could not find any long term survivor using Google
“Diagnosed with the deadliest form of Fallopian tube cancer caused by the BRAC1 mutation. I was desperate to find other people. Searching on Google I couldn’t find any long term survivors, nor any specific information for my case and that was terrifying. Now, many years later I joined this community as an ‘expert’ to connect with other people like you and scientists from all over the world to help others and accelerate treatments”
– Melanie Roche
SocialGenomics is helping parents who are searching
“We first lost our daughter before birth due to the Bardet-Biedl Syndrome. Through her data the doctors were able to diagnose our son. As parents you have hopes and dreams about your children. Our dream is to be part of developing gene therapy for eye diseases. SocialGenomics is helping parents who are searching for answers and searching for means to take action. Are you such a parent yourself? Join this global network so we can help each other.”
– Bendert de Graaf
I believe in a future where rare diseases are treatable.
“Being born with a rare disease(Severe Hemophilia B), I have always had an abnormal life. Looking back, my childhood was filled with pain and visits to the hospital. I’m inspired by the mission of SocialGenomics becasue I want a future where rare diseases don’t affect daily life and a future where they are treatable. Susanne Baars is one of the most dedicated people I have ever met and I’m sure she has what it takes to make this happen.”
– Santosh Manivannan
Connecting the Dots.
“Diagnosed with the rarest type of Usher in the world, access to genomic knowledge could possibly bridge the gap for my daughter between loss of both vision and hearing and finding a cure, by connecting a lot of dots in a complex healthcare ecosystem!”
– Jeroen de Punder
His data can save someone else’s life.
“In 2016, my son Mathieu (14 y) died because of sudden heart death caused by a rare heart mutation. I joined SocialGenomics to make his suffering a legacy by helping others to survive and hopefully find a cure for my family. By sharing knowledge, we move faster. That’s what drives me.”
– Martijn de Bie
A dream come true
” This sounds like a dream come true. If this would have been here 5 years ago, my mother might still have been alive today”
Are rare diseases really rare?
” Our daughter Eline passed away at the age of 2.5 months due to a rare genetic mutation. So much grief, and fear this will happen to one of my other kids. I joined SocialGenomics because I believe everyone deserves a diagnoses. I believe somewhere in the world there will be another girl like Eline.”
I want to find a cure
” In 2016, my son Mathieu, a 14 year old happy boy, suddendly died because of sudden heart death caused by a rare heart mutation. I want to be part of SocialGenomics to find a cure for myself, my daughter and their future children and all other families suffering from the same. By sharing knowledge, we can save lives. That’s what drives me.”
– Martijn de Bie
Supported by visionary leaders
Meet the visionary leaders taking action for access equality in their countries, organizations and beyond. SocialGenomics MOONSHOT engages with these key decision makers around the world in the public and private sector to drive change from the top. These global leaders are on a journey to reach parity and achieve a gender equal world for all.
A WOMAN ON A MISSION
“Susanne Baars, a woman on a mission. Using her expertise knowledge about genetics to contribute to a more sustainable and fair world with less disease suffering. I admire her drive, perseverance and courage.”
– Prof. Dr. Jan Peter Balkenende,
Former Prime Minister,
SocialGenomics has a huge impact on society
“I believe SocialGenomics has a huge impact on society and our economy. We need to use data and smart new ways to reduce the cost of developing new medicines and treatments, while at the same time reducing the burden for patients, their families and their professional lives.”
– Erik Gerritsen,
Secretary General Ministry of Health,
We have the technology
“The time is now. We need to disrupt classical care giving. We have the technology and we have Susanne, who is determined to improve lives and give hope with social genomics, addressing the world’s most rare or pressing diseases through genetics and data.”
– Dr N.S. Nicky Hekster,
IBM Watson Health EMEA