What is Rare360?
Rare360 is a program developed by the Adults Living Rare Initiative. Designed to connect community-focused stakeholders dedicated to developing trusted community-based relationships, rare360 requires the Perspectives, Insights & Experiences (PIE) of people living with rare diseases or caring for a person with a rare condition be valued (reference RAM's Fair Market Values for Rare Disease Insights).
A prestigious and exclusive partnership program, only thoroughly vetted organizations qualify to become rare360 partners. Industry, academic and advocacy based stakeholders who qualify for a rare360 partnership must be community-focused and sincerely dedicated to improving the lives of patients, carers and their families through respect and by upholding the established fair market value of lived-experience experts and advisors of the rare disease ecosystem.
Lived Experience Professional Advisors
The advocacy landscape has been historically siloed, primarily representing the voices of privileged parents and nonprofit business professionals that often self-identify as "patient advocates." A rare disease focused, registered, non-profit business cannot exist in the community-based landscape. For this reason, the Rare Advocacy Movement (RAM) is not a registered, non-profit organization and must partner with a registered entity in order to deploy any initiative, collaboration or program. RAM is a novel, first of its kind, organized network designed to exist perpetually within the community-based landscape of the rare disease ecosystem.
While there are community-focused nonprofit organizations in existence, the majority of existing nonprofit organizations are advocacy-focused, driven by seasoned nonprofit professionals that are naturally detached from the lived experiences of the community-based landscape. While advocacy-focused organizations are vital to several support systems that the community is in support of and grateful for, disease-specific insights obtained in collaboration with the community-based landscape are often very different from the disease-specific insights obtained in exclusive collaboration with the nonprofit advocacy-based landscape.
In order to successfully expedite the development of treatments and cures, it is imperative that the stakeholders in charge of making decisions within their respective landscapes within the rare disease ecosystem understand each landscape's respective roles within the therapeutic development continuum and corresponding real world capabilities.
The Perspectives, Incentives and Experiences (PIE) of the community-based landscape is currently in a perpetual state of flux as the influencers of the community-based landscape unite, coordinate and collaborate to solve common issues experienced across the globe.
Being the first and currently only organized network within the rare disease community-based landscape, the Rare Advocacy Movement developed the rare360 program to connect the global rare disease community in a compliant and ethical manner to trusted industry, academic and advocacy stakeholders.
Through the rare360 program, lived-experience professionals from the community-based landscape can now partner with community-focused allies from the academic, advocacy and industry landscapes to navigate the entire rare disease ecosystem.
The drug development continuum historically has struggled to gain access real world community-based insights. Additionally, the advocacy landscape has found itself stretched thin in the attempt to meet its own sustainability needs coupled with the business and regulatory needs of their sponsors from the academic and industry landscapes. Because of the strain on resources, several advocacy-based nonprofit organizations resort to publishing detached community-facing messages that victimize patients and exploit community-based perspectives, experiences and stories. This widespread practice has resulted in the development and reinforcement of competing silos and territorial bottlenecks, significantly slowing down the commercialization of rare disease treatments and therapeutics.
By connecting community-focused stakeholders with trusted organizations from all four landscapes that encompass the rare disease ecosystem, rare360 has established a sustainable solution for the damaging advocacy-based silos and bottlenecks that have historically impacted the efficiency of the rare disease ecosystem.