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.
The Everyone is RARE RAM Collaboration is a rare disease community-based effort designed to understand the needs of the global medically complex patient community in order to identify real-world strategies and sustainable protocols that will establish an equitably inclusive precision medicine system of practice across the healthcare industry.
As reported by the Adults Living Rare Initiative, currently, the diagnostic odyssey for the medically complex population is not only permanently traumatizing (i.e. resulting in medical PTSD), but also a financial burden on patients, their families, and the national economy. Additionally, coupled with the long-term effects of the COVID-19 pandemic on 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.
The Everyone is RARE collaboration will begin by conducting a community-based landscape analysis to establish the real-world needs of the medically complex community. This landscape analysis will then guide the strategy development and protocol implementation of existing Precision Medicine technology to ensure real world applicability and sustainability.
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 have provided sufficient evidence that real-world protocol development requires the removal of industry and academic-based filters and misunderstandings. The rare disease community-based landscape, housed within the Rare Advocacy Movement, is the world’s first community-based network of lived experience professionals, designed specifically to remain community-based. As a result, the brilliant solutions and therapeutics developed for healthcare industry implementation can now be practically informed by community-based insights, guidance and partnership.
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.
RAM is a rare disease community leadership network founded on the premise of developing mutually beneficial collaborations between rare disease community leaders, influencers, experts and other rare disease stakeholders, with the goal of developing insightful publications, programs and initiatives dubbed RAM Collaborations.
RAM removes toxic competition amongst community-based rare disease leaders, influencers and experts and replaces it with support, camaraderie and mentorship as rare disease experience professionals and community-focused allies navigate the drug development continuum, regardless of which disease specific community one originally belongs to. The RAM network encourages unity, collaboration, professionalism and support amongst the membership, embracing the concept, "a win for one is a win for us all".