What is rare360?
rare360 is a program hosted by the Adults Living Rare Initiative, designed to not only connect community-focused industry-based stakeholders dedicated to developing trusted relationships within the community landscape, but to also value the Perspectives, Insights & Experiences (PIE) of the people of the Living Rare community.
The rare360 program is prestigious and exclusive to thoroughly vetted partners. Industry -, academic - and advocacy - based stakeholders that qualify as a rare360 partner must be community-focused and authentically dedicated to improving the lives of patients and their families through respect, consideration and acknowledgment of the community's value within the rare disease ecosystem.
Comprehensive Experience Professionals
The current advocacy landscape is siloed, only representing the voices of the privileged and individuals that self-identify as "patient advocates." Often, nonprofit advocacy organizations are driven by professionals that are detached from the community-based landscape. When comparing the real world community landscape, it looks very different from the advocacy landscape.
The Perspectives, Incentives and Experiences (PIE) of the real world community is in constant flux with highly respected experience professionals and community-focused allies that have mastered navigating the entire ecosystem.
The advocacy, academic and industry landscapes move significantly slower. In fact, the advocacy community has an approximate 9-14 month lag behind the community landscape in making announcements that often duplicate community-based efforts. And upon finally catching up to current community-based trends, deploys a 6 month learning period that requires the practice of social listening and data-mining that often results in filtered, misinformed insights.
The advocacy landscape has grown dated and detached from the communities it claims to serve. As a result, research and development has suffered significantly. The real world people and community-based organizations feel exploited and dehumanized by several advocacy initiatives and social campaigns.
The rare360 program, exclusive to the RAM network, is a community-based program designed to address and solve the damage advocacy-based silos and bottlenecks have caused across the rare disease ecosystem. A system of vetting has been deployed to identify comprehensive disease-specific experience experts and community-based organizations that offer valuable insights and guidance to vetted community-focused organizations and companies.
Please note that neither current or past membership within the RAM network qualifies an individual as a rare360 expert or a community-based experience professional. All self-proclaimed affiliates of RAM can be confirmed by contacting us.