Press Release: TREND Community is proud to announce our new Advisory Board Members, Wendy White and E. Robert Wassman, both accomplished experts in the rare disease field.
Wendy White is an innovative leader working for over 20 years in Rare Disease at the intersection of advocacy, technology and business. She currently works as a consultant to biopharma companies developing patient centered strategy and innovation commercialization plans. Prior to that, she founded, grew and transitioned Siren Interactive Corporation to Dohmen Life Science Services as part of a long-term vision to integrate patient-level insights into the drug delivery continuum. She is the mother of a child with a rare disorder and publisher and co-author of Uncommon Challenges; Shared Journeys—Stories of Love, Hope, and Community by Rare Disease Caregivers.
E. ROBERT WASSMAN, M.D.
Dr. Wassman has pioneered the introduction of genetic testing and personalized medicine for over 30-years. His focus has been on the translation and delivery of cutting-edge diagnostic technology to clinical service in the areas of reproductive medicine, rare cell/non-invasive diagnostics, and Next Generation DNA sequencing spanning clinical disciplines of reproductive genetics, cancer and companion diagnostics, and neurodevelopmental disabilities including autism. He has served as Chief Medical Officer for multiple companies in this space including Genzyme Genetics and Lineagen. He has co-founded several successful ventures.
TREND Community is a digital health company with a mission to accelerate the search for treatments, interventions and cures while improving the quality of life for individuals living with rare disease.
Contact: firstname.lastname@example.org for more information.
Come tell your story on TREND Community and join our #RareStory campaign for #RareDiseaseDay!
Using the TREND Community My Story tool, tell us about your rare disease journey including photos of you and your loved ones. Then print it or share it with the world on social media on #RareDiseaseDay. To get started, request an invitation on our website: www.trend.community (scroll to the bottom of the page).
For questions, please email email@example.com
capturing the patient perspective on living with congenital rubella syndrome
February 1, 2018 – TREND Community is excited to announce The CRS Patient Voice Initiative to capture the patient perspective on living with Congenital Rubella Syndrome.
Rubella is an infection caused by a virus, which when contracted by a pregnant woman leads to Congenital Rubella Syndrome (CRS). This underserved group hopes to raise awareness about CRS and collect data to inform: the healthcare system to better recognize, research, and alleviate the symptoms of this disease; government to gain recognition of the disease as a disability and lifelong problem; and survivors of the syndrome to give a clearer picture of the disease.
The CRS Community will join TREND and share their stories, daily experiences through journals and years of social media data. All participants will consent to share agree to share their data with TREND Community and back with the CRS Community. Using natural language processing and machine learning techniques, TREND Community will analyze this data to gain insight into the disease burden and progression of CRS. TREND Community’s Voice of the Patient Report will inform the medical and research communities. And using what we learn, TREND Community will organize a targeted Health Initiative to empower its patients & caregivers to explore a solution that could ease the burden of one or more of their daily challenges.
About TREND Community
TREND Community is a digital health company with a mission to accelerate the search for treatments and cures while improving the quality of life for individuals living with rare disease. Our flagship application is an invitation-only network of consented patients and caregivers living with rare disease who are engaged in community powered science.
If you are interested in this Exploration, or would like to start your own Exploration, contact us firstname.lastname@example.org. Follow us on Twitter @TrendCommunity.