Joint efforts will form best practices for non-profit health organizations to leverage patient self-reporting with the goal of advancing science, treatment and quality of life.
StuffThatWorks, home to three million patients contributing data across 1,250 chronic conditions, has selected The Marfan Foundation for a pilot program to outline best practices for how non-profit health organizations might apply real-world data. StuffThatWorks draws on the principles of the global navigation system WAZE, a platform its leaders designed and launched.
The Marfan Foundation is the world’s most extensive patient and professional community addressing the needs of people living with genetic aortic and vascular conditions, serving one million people with educational materials and reaching 3.2 million people in the digital space annually.
The Marfan Foundation will play a crucial role in informing individuals living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes and related conditions about the resources and community dialogue offered by StuffThatWorks. This collaboration will enable StuffThatWorks to develop a comprehensive strategy for engaging non-profits, with the goal of ultimately benefiting the global patient community.
“We’re honored to have been selected as the first non-profit to align with StuffThatWorks to elevate community members’ voices, foster additional personal empowerment, and advance access to potential learnings that may be derived through global self-reporting,” said Michael L. Weamer, CEO of The Marfan Foundation.
StuffThatWorks’ operational value is that patients’ crowdsourcing information can highlight issues that need to be addressed from the patient perspective as well as spotlight various treatment options, side effects and obstacles to care: “Understanding how patients experience various treatments is one of them,” according to their website.
“The Marfan Foundation has a steadfast commitment to scientific rigor and fostering a strong global community. Operationally, the Foundation leverages world-class experts to focus on research and best practices in patient engagement and empowerment,” says Yael Elish, CEO of StuffThatWorks. “The Foundation’s investment in basic and applied research and translating these understandings into patient support and education reinforces that real-world data is valued in applications with the potential to advance treatments and quality of life.”
“We’re enthused to share what we know about specific non-profit needs and goals while we learn more about the possibilities StuffThatWorks’ patient-centric knowledge-base will offer,” said Weamer.
About 1 in 5,000 people have Marfan syndrome, including men and women of all races and ethnic groups. Roughly 3 out of 4 people with Marfan syndrome inherit it. There is a 50 percent chance that a person with Marfan syndrome will pass along the condition each time they have a child. Because connective tissue is impacted and found throughout the body, Marfan syndrome can affect many body parts. Features of the condition are most often found in the heart, blood vessels, bones, joints, and eyes. Some Marfan features – for example, aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) – can be life-threatening. People living with Marfan syndrome and related conditions have a 250 times greater risk of aortic dissection than the general public. The lungs, skin, and nervous system may also be affected.
About StuffThatWorks
Created by Waze founding team members, StuffThatWorks uses crowdsourcing and AI to empower patients to transform their experiences into organized, large-scale, structured Real-World Data needed for research. StuffThatWorks is the home to three million members across 1,250 condition communities that have shared 1.3B data points. Now the largest organized Patient Level Real World Data platform, StuffThatWorks is differentiated by its expansive data collection, structuring, and organization of accessible information. The unique, proprietary data set and unique AI and powerful Chat GPT-like capabilities enable the generation of insights for research, market access, and drug development.
Crowdsourcing Treatments that Work | Community Research | StuffThatWorks
About the Marfan Foundation
The Marfan Foundation is a global nonprofit organization that empowers people with genetic aortic and vascular conditions to foster optimal quality of life and longevity while building community. We save lives through research and education, enabling healthcare providers to offer the best-quality treatment and helping to foster mental and physical wellbeing. We serve communities impacted by Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos Syndrome, and related conditions. To learn more, visit marfan.org or meet us on social media:
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The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.