What others think about the mission
Giving hope to people.
“Susanne Baars, a woman on a mission to present a new resolution of self-ownership over genetic DNA to the UN and world governments across the globe as a fundamental right that needs universal protection. 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.”
Jan Peter Balkenende External Senior Advisor to EY, Former Prime Minister of the Netherlands, Professor at Erasmus University Rotterdam
A radical system-shift: the right to own your ‘self’
“As long as systems prevail above individuals, something is wrong. Susanne (28 years old) has the talent to change this perspective with her dream to make everybody owner of their own DNA: to safely share, store and save millions of lives.
Yes, this initiative will meet a lot of resistance, because it asks a radical change in thinking: the more resistance you meet on your mission, the more certain you are that you’re doing the right thing. Because transition is difficult and it is key. Initiatives like this is what we need: The right idea, the right time, the right place, the right right….to own your ‘self’. That’s why I support Susanne all the way to the United Nations to present the Declaration of Self Ownership over Genomic Data as a human right. Keep up the important work you do, Susanne.”
Yolanda Eijgenstein – One of the most versatile and influential businesswomen in the Netherlands
Self-ownership over genetic data helps to get a healthier planet!
In 2003 I was diagnosed with cancer. From personal experience I know that self-ownership of genetic data has a positive influence on getting and feeling healthy again. It also stimulates health and life science and makes the world healthier as a whole.
Dirk-Jan van der Pol Thought Leader Health(care), Evangelist of FAIR Data/Personal Health Train and Healthcare/lifescience innovations
“For me it is obvious: I found my cure, no one else.”
Dear Susanne, in my condition PAH it is simple, why to own genetics should be known by the patient. As I told you, I have 2 rare conditions cause by the same gene. Some time a young lady, only 17, got a similar idiopathic (dont know)-PAH like I have gotten at 30. She then developed nose bleeds and there was good reason, to mention, that the gene that is affected in me is associated with IPAH / HPAH as well as HHT. Just to be sure and to getting aware of the risks, I suggested having ACVRL1 gene (known to cause both if hitten in the intra cellular area of the coded receptor) tested.
Her treating PH expert at a very big PAH center in Germany, top 10 in Germany excluded HHT by so called curacao criteria, a clinical way for HHT diagnosis. But what he might have overseen, that these criteria dont apply for a 17 year old, cause many symtoms come later so it has a sharpness of maybe 55%. Later this young lady had an extreme detoriation went downhill from NYHA1 to NYHA4 exercise class and was full of HHT related shunts in the lungs, heart liver. I didnt wonder about that, but knowing this, one had for sure could have reduced exercise, and maybe have taken some antiproliferative treatment into thinking
And this is only about knowing and understanding the individual disease. Another point would be swarm-experience. In times of social media, multiple more or less creative brains could do brainstorming or adding 1+1 of observations to find solutions. And this could be for free.
Board Genetic Disease Patient Organisation – Germany
“I would like to think that if somebody does a test on me or my genes, that that’s mine”
President Barack Obama
“By sharing knowledge globally we can accelerate scientific research 10.000x”
Mapped the Human Genome.
Vision that Genomics will change the future.