EVERYONE
Is
Rare
On average, 7.8 billion people inhabit the planet, and about 320 million of the world's population have at least one rare disease. But what if we told you, that the fundamentals of genetics and genomics has confirmed that each and every single one of us will be able to classify as having a RARE health situation at some point in life?
Precision Medicine is poised to revolutionize the practice of medicine and our abilities to prevent and treat disease. Since the landmark completion of the Human Genome Project in 2003, rapidly accelerating genomic technology and sequencing capabilities have unveiled the hidden medical complexities of the real world human population. Now that the Telomere-to-Telomere (T2T) Consortium has produced the most complete draft of the human genome to date, the scientific community has provided the healthcare industry with the necessary foundation for the development of effective treatments and potential cures for over 5600 rare genetic diseases.
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The Everyone is RARE Collaboration (EIRC) is a rare disease community-based RAM initiative designed to understand the needs of the global rare disease, disability, undiagnosed and chronic illness patient communities in order to identify real-world solutions and sustainable protocols that will establish an equitably inclusive precision medicine system of practice across the healthcare industry.
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As reported by the Adults Living Rare Initiative, currently, the diagnostic odyssey for the medically complex population is not only traumatizing (often resulting in medical PTSD), but also a significant financial burden on patients, their families, and the national economy. Additionally, coupled with the long-term effects of the COVID-19 pandemic on the overall health of the human population, the total number of individuals suffering from the mental health effects of medical PTSD will only increase until equitably accessible Precision Medicine protocols are established and sustainably implemented on a global scale.
EIRC has conducted a community-based landscape analysis that has lead to the establishment of a novel, sustainable solution that meets the real-world needs of the global patient community. EIRC's novel, sustainable solution is driven by the strategic minds of community-based experts and community-focused stakeholders dedicated to ensuring real world applicability on a global scale. Through EIRC's solution, the patient community will be provided with the tools to thrive, as opposed to the traditional methods of exploitation.
The only way Precision Medicine will ever become a practical solution to real-world issues is if the strategies to implement sustainable protocols are informed by authentic community-based insights. The continuous abandonment of clinical trials that fail to implement real-world insights into its designs and protocols have provided sufficient evidence that real-world protocol development requires the removal of misinformed industry and academic-based siloes. The rare disease community-based landscape, housed within the Rare Advocacy Movement's network, is the world’s first community-based network of united people with rare disease lived experiences, designed specifically to remain community-based. As a result, the brilliant solutions and therapeutics developed for healthcare implementation is now being practically informed by community-based insights, guidance and partnerships.
Everyone is RARE is fueled by the demand for equitably inclusive and accessible Precision Medicine services, the basic human right to health, wellness and happiness, and the practice of responsible consumption and informed consent.
Everyone is RARE is motivated by the real world community-based need for medical justice.
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#EveryoneIsRare
RAM's leadership has been accepted into the Millennium Fellowship program, by the United Nations Academic Impact and MCN program.