What is rare360?
rare360 is a program hosted through the Adults Living Rare Initiative. Designed to connect community-focused stakeholders dedicated to developing trusted community-based relationships, rare360 also 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).
The rare360 program is prestigious and exclusive to thoroughly vetted stakeholder 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 and their carers through respect and by upholding the established fair market value of lived-experience experts and professionals of the community-based landscape within the rare disease ecosystem.
Lived Experience Professionals
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 a few 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. As a result, the disease-specific insights obtained in collaboration with the community-based landscape are often very different from the disease-specific insights obtained in 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 on a global scale.
Being the first and currently only organized network within the rare disease community-based landscape, the Rare Advocacy Movement developed the rare360 program to function as a virtual highway for the entire rare disease ecosystem.
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.
Prior to the development and successful deployment of RAM's rare360 program, the drug development continuum struggled to access real world community-based insights. The advocacy landscape found itself stretched thin attempting to meet the out-of-reach needs of the academic and industry landscapes. Because of the strain on resources, several advocacy-based nonprofit organizations resorted to publishing detached community-facing messages that victimized patients and demanded the exploitation of 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 within all four landscapes that encompass the rare disease ecosystem, rare360 has established a successful solution to the damaging advocacy-based silos and bottlenecks that have historically impacted the efficiency of the rare disease ecosystem.
All rare disease stakeholders interested in learning more about rare360 are encouraged to contact us directly or Rare Love Ventures. Please note that neither current or past membership within the RAM network qualifies an individual as a rare360 expert nor an affiliated community-based lived-experience professional. All self-proclaimed affiliates of RAM can be confirmed by either contacting us or by emailing firstname.lastname@example.org.