Sharing experiences with patients with a similar case
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Helping Harry and patients like him to access life-saving information from similar patients
Across the world, there are more opportunities rising with personalized treatments. However, innovations are only meaningful when patients have access to it.
After hearing the diagnosis ‘you have cancer,’ most patients and their loved ones experience a traumatic response. Especially if you hear ‘there is nothing we can do’. For patients, this is the point the true search starts. Because how do you know if there is indeed nothing anymore?
Maybe on the other side of the world, or in a neighboring country, another patient or physician in a similar situation has found something or someone who could help.
What to expect as a patient? What can you do to strengthen yourself and to feel more in control over making decisions? Patients and physicians may not know about all personalized treatments available. Once you receive treatment, many patients respond differently, with different side effects and different tumor responses.
This is where the SocialGenomics patient network can help. We are dedicated to helping patients by improving access to life-saving information from similar patients, guidance and expert advice.
By building a global network with shared experiences from similar patient sub-groups, every member is able to learn from the collective insights.
“Diagnosed with incurable esophageal cancer I almost lost all hope. After hearing the diagnoses I walked home thinking ‘this is it, there is nothing anymore. I will die.‘ Susanne gave me hope and believe and this was a gamechanger for me. After talking with Susanne I realized there are things we can do to extend my life or find a cure. This gave me a strong mental boost, which I needed.”
– Harry Verbunt
“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, Long-term cancer survivor
“As a patient with a barely known rare disease and as a carer, I have been looking for what SocialGenomics provides for too long. I needed one central location or platform where I can get information about my own condition, how to manage and monitor it. At the same time, I also want to manage my parent’s complex health conditions, to get relevant updates about clinical studies and especially, details around which doctor or clinic is advised to consult. I want to connect with other patients and carers, learn from them and understand their challenges along their journeys. SocialGenomics has a huge potential to bring all of this into one single platform no matter where I live.”
– Nicole Estermann, patient and caregiver
“In 2011 our daughter was diagnosed with a terminal disease, the doctors couldn’t help her any further. By connecting to other patients with the same genetic mutation and initiating research, we saved my daughter’s life. SocialGenomics is using technology to digitize this process! Using the power of AI and patient communities to easily share, connect and multiply lifesaving information. And honestly, that is all what matters in such a situation. As every day counts.”
– Christian Kromme, father
Launching a MOONSHOT
Being raised in a medical family specialized in precision medicine, Susanne Baars – a former Harvard scientist and thought leader with over ten years of experience in precision medicine, used her own experiences with working alongside patients, physicians, scientists and governments to set out on a mission to unlock the power of many patients together to find treatments and accelerate AI drug discovery research. This MOONSHOT is to help Harry and millions of other patients and future generations.
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“Groundbreaking SocialGenomics.co connects patients to each other, and researchers looking for cures, to patients who need those treatments. It’s a brilliant model, and I recommend all my patients register: As new research becomes available, this just might save your life or the life of someone you love.”
– Minas Chrysopoulo, MD, Texas, USA.
“We feel passionate about SocialGenomics and the people behind them Sandoz sees the future of healthcare as being driven by two closely related factors: the digital revolution and the need for strong collaboration between companies. We feel passionate about SocialGenomics team and so we are excited to offer support and prize funding to make this happen!”
– Carol Lynch, President Sandoz Inc, USA, 2019