Lived Experience Professional Advisors

 

The advocacy landscape has been historically siloed, primarily representing the voices of privileged parents and non-profit 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. Instead, RAM is a decentralized autonomous organization, designed to partner with registered entities in order to deploy initiatives and collaboration programs. RAM is a novel, first of its kind, community-based global network designed to execute a three phased historical event for the benefit of the rare disease ecosystem.

While there are community-focused non-profit organizations in existence, the majority of existing non-profit organizations are advocacy-focused, driven by seasoned non-profit 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-based landscape relies on, 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 non-profit advocacy-based landscape.

 

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 through a compliant, ethical and sustainable program.  

The drug development continuum historically has struggled to gain access to real world community-based insights. Additionally, the advocacy landscape has found itself stretched thin attempting to meet its own sustainability needs in conjunction with the business and regulatory needs of industry and academic sponsors. 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. 

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By connecting community-focused stakeholders with trusted organizations from all four landscapes that encompass the rare disease ecosystem, rare360 has established a sustainable solution that benefits all stakeholders active in the rare disease ecosystem. 
 

Interested in learning more about rare360? Contact us directly or Rare Love Ventures. 

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