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: email@example.com 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 firstname.lastname@example.org
Press Release: The Congenital Rubella Syndrome Community Joins TREND Community to Discover Patient Insights About Disease Burden and Progression Through Social Data Analysis
The Congenital Rubella Syndrome (CRS) Community has partnered with TREND Community to find answers for CRS survivors. This underserved group hopes that an analysis of years of discussions shared through Facebook and email, along with patient & caregiver contributed stories, will provide them with clear 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.
Through an analysis* of real world discussions and patient & caregiver contributed stories, TREND Community’s Voice of the Patient Report will provide insight into the disease burden and progression of CRS and inform the medical and research communities.
TREND Community also aims to discover an unmet need of the CRS Community and organize a targeted Health Initiative to empower its patients & caregivers to explore a solution that will ease the burden of one or more of their daily challenges.
TREND Health Initiatives are observational or interventional pilot projects intended to provide immediate benefit to the community while generating hypotheses for future research. All data are shared back with the community upon completion.
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.
*Using natural language processing and machine learning techniques, TREND Community captures the patient voice from their stories, discussions and journals.
ABOUT CONGENITAL RUBELLA SYNDROME:
Rubella is an infection caused by a virus, which when contracted by a pregnant woman leads to Congenital Rubella Syndrome (CRS). CRS is an important cause of severe birth defects with multiple symptoms including but not limited to: swallowing issues, physical limitations, deafness, blindness, chronic pain and neurological issues (intellectual impairment, learning difficulties, and neurological decline all of which may worsen with age). The World Health Organization recommends rubella vaccination to lower the number of people born with CRS.
Press Release: The Chion Foundation and TREND Community Partner to Identify Novel Treatment for Prader-Willi Syndrome
The Chion Foundation, an organization committed to improving the lives of individuals affected by Prader-Willi Syndrome (PWS) and other rare diseases, has partnered with Trend Community, an innovative patient experience and engagement platform, to launch the Pitolisant Health Initiative to explore the potential of pitolisant (sold under the brand name of Wakix™) to address the many unmet needs of patients with PWS. PWS is a rare, complex disease characterized by hunger, disturbances in the sleep/wake cycle, excessive daytime sleepiness, low muscle tone, and decreased cognition. Pitolisant is an inverse agonist of the histamine h3 receptor recently approved in Europe as a treatment for the rare sleep disorder of narcolepsy with or without cataplexy.
While pitolisant is currently only available in Europe, the Chion Foundation and TREND Community have worked with the US Food and Drug Administration (FDA) to help individuals personally import pitolisant from Europe based upon the FDA’s discretion. These families are documenting their experience with pitolisant on TREND Community via journaling and survey
questions. Thus far, the Chion Foundation has identified seven US families affected by PWS who have been prescribed and are now taking pitolisant via the FDA’s personal importation program. Caregiver reported data suggest that pitolisant is well-tolerated and has neurological benefits that extend beyond wakefulness to include mental clarity, increased processing speed, improved attention, and improved muscle tone. Early patient experience with pitolisant is encouraging.
Immunologist and co-founder of Chion Foundation, Lara C. Pullen, PhD identified pitolisant as an ideal drug to be repurposed to treat many of PWS’ clinical manifestations. The histamine h3 receptor is located in the brain and gut, and is known to regulate not only sleep/wake states, but also hunger, cognition, and movement, all of which are debilitating problems for patients with PWS.
Today Harmony Biosciences announced its licensing agreement with Bioprojet Pharma to bring Wakix to market in the United States (read press release). The Chion Foundation and Trend Community intend to continue its collection of patient experience data.
About Chion Foundation: https://www.chionfoundation.org/
About Trend Community: https://trend.community/
About FDA Personal Importation Program: https://www.fda.gov/ForIndustry/ImportProgram/ImportBasics/ucm432661.htm
About Harmony Biosciences: https://harmonybiosci.squarespace.com/
Irvine, CA. TREND Community's CEO, Maria Picone, presented on the TREND Community platform and Targeted Health Initiatives at the Global Genes 2017 Rare Partnering & Investor Forum.
Silver Spring, MD. TREND Community's Maria Picone and Blair Van Brunt and The Chion Foundation's Lara Pullen were invited to meet the U.S. Food & Drug Administration (FDA) to present TREND Community's novel approach to systematically collect patient real-world experience data.
Representatives from the offices of: CDER, Patient Affairs, Patient Liaison Program, Professional Affairs and Stakeholder Engagement Staff, Metabolism and Endocrinology Dept, Office of Orphan Products Development and Office of Rare Diseases were in attendance.
The team presented data from the following TREND Community Health Initiatives:
The Pitolisant Initiative & The FA Patient Voice Initiative.
Rochester, NY. TREND Community's CEO, Maria Picone, presented at the University of Rochester Technology & Rare Neurological Diseases Symposium on Using analytics technology and targeted health initiatives to incorporate an amplified patient voice into all aspects of the drug development process and drive community-powered science.
Checkout the TRNDS Speaker Spotlight on Maria: http://trnds.org/trnds-interviews-maria-picone/
Bethesda, MD. TREND Community's Maria Picone and Blair Van Brunt met with the National Institutes of Health (NIH) National Center for Advancing Translational Services (NCATS) to present TREND Communities novel approach to discover patient perspectives and experiences using social data analytics.
Rhythm Pharmaceuticals (rhythmtx.com) partnered with TREND Community to launch patient registry for rare genetic disorders of obesity.
Sponsored by and in partnership with the Friedreich's Ataxia Research Alliance (curefa.org), The TREND Community FA Patient Voice Initiative was launched to generate evidence for the Friedreich's Ataxia (FA) community's Patient-Focused Drug Development Meeting with FDA. Using social data analysis on FA-specific Facebook group conversations, TREND Community is capturing the community's perspectives on the questions posed by FDA.