PHE - Resources

"iHopeTM Genetic Health (iGH) will eliminate the barriers to genomic insights for tens of thousands of individuals across the globe each year by addressing access to high-quality clinical whole genome sequencing (cWGS) as well as education and support. Leveraging contributions of genomic sequencing technology from Illumina and donations from philanthropists and technology and logistics partners, iGH will provide awards of reagents and, where necessary, sequencers and software to enable genomic testing across the globe. iGH will provide cWGS and patient support services for undiagnosed individuals in low and middle income countries1 (LMICs) and low-to-moderate income2 (LMI) households across the globe and in the United States (US) respectively. Over time iGH will develop in-country, sustainable solutions for communities with little to no access to genomic care."

"Multiple Chronic Conditions Community: People who live with multiple complex, chronic, persistent, painful and often mystifying health conditions are not only resilient but wise due to the expertise gained from managing MCCs and navigating healthcare systems. Comparative Effectiveness Research (CER) can benefit from their expertise. People who help patients manage their health whether as professional care providers, insurance providers, policy makers, researchers, family or friends who care each day about these patients are also considered members of the MCC community. Building a diverse multi-stakeholder team to design CER studies to improve health outcomes for MCC patients requires a thoughtful and person centered approach to building a research community. "

"Autoimmune diseases are complex. Advancing treatments doesn't have to be. From your very first symptom to your eventual diagnosis and treatment, your unique autoimmune journey has accumulated valuable data that tells a story that could lead to better treatments. Unfortunately, this story is trapped in various health systems and sits there, unused. As the patient, you have the power to unlock this data. With your permission, DrugViu will find and consolidate all your medical records and return them back to you on your own secure portal, for free. There, you'll have a holistic view of your entire health history, while also having the power to share your records with current and future medical providers. You'll also have the option of contributing your de-identified and anonymized data to scientists and doctors working to find better treatments and improve the diagnosing process. Together, we will power tomorrow's cures."

"What is a Transformational Community? A collection of individuals who share an intention to support each other's growth, development, health, and wholeness."

"Now more than ever, the global mental health community must look to innovative solutions to curtail the 'second epidemic' of mental ill-health sweeping the world. The huge variety of solutions has created a new problem - how can one ensure the disruptive tech they are using is clinically validated, ethical and efficacious? The Forum has partnered with Deloitte to create a set of standards to vet digital mental health solutions called the Global Governance Toolkit for Digital Mental Health."

"Thesis: "Patient Empowerment through Timely Information" On Friday, 1 October 2021, Thomas Timmers (CEO) successfully defended his doctoral PhD "Patient Empowerment through Timely Information" at Radboudumc.   He examines the impact of the provision of timely information using an app to increase patients' self-management throughout their treatment. The thesis includes a systematic review and the results of 2 large multi-center RCT's. Furthermore, a qualitative study was performed to determine what kind of timely education patients need."

"As a repository of sensitive patient information, the company's databases churn silently behind the scenes of their medical care, scooping up their most guarded secrets: the diseases they have, the drugs they're taking, the places their bodies are broken that they haven't told anyone but their doctor. The family of databases that make up MarketScan now include the records of a stunning 270 million Americans, or 82% of the population. The vast reach of MarketScan, and its immense value, is unmistakable. Last month, a private equity firm announced that it would pay $1 billion to buy the databases from IBM. It was by far the most valuable asset left for IBM as the technology behemoth cast off its foundering Watson Health business."

"The Nutrition for Precision Health consortium includes $14.55 million to launch a new Microbiome and Metagenomics Center at UC San Diego. The center will analyze the microbiomes - communities of microbes and their genetic material - found in the stool samples of nutrition study participants. "

"A vaccine authorized in December for use in India may help solve one of the most vexing problems in global public health: How to supply lower-income countries with a COVID-19 vaccine that is safe, effective and affordable. The vaccine is called CORBEVAX. It uses old but proven vaccine technology and can be manufactured far more easily than most, if not all, of the COVID-19 vaccines in use today."

"Rachelle Babler explores the untapped powers of combining music and advocacy to create human impact. She did this after losing her sister to colon cancer to create awareness around prevention and screening. The response was overwhelming. While many have advocated through speeches, fundraisers and media, very few advocate through songwriting and music. Maybe music will be the critical voice that creates the awakening to help us unite, during times of chaos and separation. When we are divided by speech, we can be united and reunited through the power of song. Rachelle Babler grew up in Southern California near the sunny beaches of San Diego and has always been an avid explorer, traveler, musician and creative soul. At the height of her career in forensics, she quit her job cold turkey to pursue her "why" and found out what that was during a global pandemic, "TO empower others to consciously advocate, SO THAT they can heal, inspire and unite the human collective". She is a #1 International Best Selling Co-Author, Speaker, Advocate. Singer/Songwriter and proud mother to her two amazing children, Austin and Camryn. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx"

"Most people who strap a fitness tracker to their wrist do so for motivation toward a daily step goal, or perhaps to prove their suspicions about a bad night's sleep. They don't necessarily think about ways it can help their employers help them."

The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®) is an integrated database and analytics hub that is designed to be used in building novel tools to accelerate drug development across rare diseases. It is being developed by the Critical Path Institute (C-Path) and NORD through a collaborative grant from the FDA [Critical Path Public-Private Partnerships Grant Number U18 FD005320 from the US Food and Drug Administration].

"Patient-Focused Drug Development (PFDD) is a process that provides patients and caregivers impacted by a rare disease the opportunity to share their experience with those directly involved in the drug development process. The Rare Disease Cures Accelerator, a Data Analysis Platform (RDCA-DAP®), a collaboration between the National Organization for Rare Disorders (NORD®), Critical Path Institute (C-Path), and the US Food and Drug Administration (FDA), can strengthen PFDD efforts to support life-saving and life-changing outcomes. This webinar is intended for patients, caregivers, advocates, students, and those who are interested in learning more about PFDD as well as efforts to accelerate research and drug development in rare diseases, such as the RDCA-DAP. For more information on RDCA-DAP, visit: www.rarediseases.org/rdca-dap. SHOW LESS "

"September 20, 2016 | About a year ago, Boston Children's Hospital launched its second CLARITY challenge. CLARITY Undiagnosed focused on six patient families searching for a diagnosis. Alongside the challenge, a documentary is being filmed, driven by Katia Moritz, a Florida psychologist who is dealing with her own undiagnosed disease. And last month another piece of the puzzle fell into place: the UnDx Consortium met in San Diego to try to put context around these diseases."

James Ian's new song called "Spaces" is made by, and for, the disabled community. While the song highlights a disease known as spinal muscular atrophy, or SMA, it also celebrates the talent of the much broader disability community.

"SPACES is a first-of-its-kind musical collaboration created for everyone with a disability by the SMA community. Each creative component of the program - song, music video and album art - was led by someone with SMA. It uses the universal language of music to elevate the many voices of this community and celebrate our individuality. We're excited to share this with the world."

Registration for this event will close on December 11, 2021 @ 4:00pm. There are 8 seats remaining. Event Details This is an in-person event at the San Diego Central Library. Masks are required for unvaccinated patrons and social distancing protocol will be followed. During World War II, heroic San Diego librarian Clara Breed exchanged hundreds of letters with young Japanese Americans in concentration camps, serving as a reminder of the possibility for decency and justice in a troubled world. Join 14 of San Diego's best poets including the City's inaugural Poet Laureate, Ron Salisbury, for an afternoon of restorative poetry. Poets will read and perform poems written specifically for this current historical moment of deep national reflection and a deadly pandemic which has locked down our lives and created isolation and fear.

RARE‐X is committed to transforming rare disease by ensuring that patient communities, clinicians, researchers, and drug developers have access to the right data at the right time. At the heart of RARE‐X's approach is a belief that patients should own their data. In July 2021, RARE‐X launched itsfirst set of rare disease pilot programs on its data collection platform supported by data governance and consent that will ensure participants who spend the time to enter their data are able to share it with those stakeholders they choose.