Toronto, Canada, May 11, 2019 –(PR.com)– Today in Toronto, organizations and industry leaders from around the world are gathering for A Rare International Dialogue, hosted by Rare Disease International and Canadian Organization for Rare Disorders.
The conference will bring together professionals across the health industry for three days of dialogue and deliberation on all things rare diseases: from research and policy, to action and better outcomes. Attendees include: patients, policy makers, gene manipulators, AI gurus, local support groups, and international research networks. As the largest and most significant gathering of rare disease advocates, the aim of the conference is to create a vision for rare disease in the 21st century and develop action plans from local to global.
Curatio CEO, Lynda Brown-Ganzert, will be speaking at the conference on the use of Artificial Intelligence as a progressive innovation on the patient experience.
As the only private social network for health that is fully globally privacy compliant, Curatio is paving the way for patients to receive the support and engagement they need from their peers. In a study of chronic illness patients who used Curatio, researchers found statistically significant improvements, with 80% of users showing an increased interest in self-management, 75% showing improved health behaviours, and 71% showing improved social integration. For providers, this translates into private, personalized peer groups created around health conditions and goals that can not only meaningfully improve patient outcomes, but also provide a more valuable way to address patient acquisition and retention.
Curatio’s role in supporting people with rare diseases is demonstrated through programs for thalassemia patients around the globe in the ThaliMe app. ThaliMe is a private social network powered by Curatio that provides peer support, trusted information and personalized programs for individuals with thalassemia.
Thalassaemia is a genetic disorder of the blood and belongs to the wider family of hemoglobin disorders. Approximately 7% of the world population is a carrier of a severe hemoglobin disorder, including thalassaemia, and between 300,000-500,000 thousand children are born each year with a severe hemoglobin disorder. Patients living with Beta Thalassemia Major require routine blood transfusions and are expected to adhere to a regimented medication and monitoring schedule for their entire lives. The lifestyle and stigma of coping with this disorder are significant and many patients confront these challenges alone. With the new programs announced for ThaliMe, patients dealing with this disease will be able to connect with each other for peer support, curated content and education, along with easy to use disease management and tracking tools – all from their mobile device.
“People living with a rare disease can experience incredible stigma and isolation, which we know can negatively impact everything from health outcomes to adherence to quality of life,” says Brown-Ganzert. “ThaliMe was created to give the global thalassemia community a private social network where they can connect with others, use monitoring and medication tools designed specifically for the condition, and get hope, inspiration and education from trusted peers. The users own their own data and have control over their privacy – important aspects in a community where social stigma and isolation are often significant barriers to achieving positive health outcomes.”
Curatio has positioned itself as a leader in the health tech industry, with their constant impetus to search for and develop new technologies. Their recent release features an AI Health Buddy as a novel way to support patients at scale. Using Artificial Intelligence, the in-app Health Buddy acts as a guide to patients who may be navigating a new diagnosis for the first time or needing support with their daily disease management.
With a unique combination of social engagement and disease management, Curatio is used by patients and families in more than 80 countries, filling a massive need for personalized, private support networks. The company’s offerings are available in 4 languages, and truly serves the rare disease community on a global scale.
Since its inception in 2012, Curatio has been a leader in providing patients with the social connection they need to improve their overall well-being. The company was recently recognized by Medical, Media, and Marketing as a member of its 2019 Top 40 Healthcare Transformers and Innovation Catalysts, the media brand’s honor roll of visionaries, gurus, self-starters, operators, and wonks bravely working to bring about change in the $3 trillion healthcare industry.
Curatio partners with payers, providers, pharmaceutical, research and patient organizations worldwide. The platform is free to download for patients, and is available in both iOS and Android. Curatio is now accepting appointments from providers interested in licensing their solution. Book a demo with Curatio for more information and to and see how Curatio can help your patients live happier, healthier lives.
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