rare360

Comprehensive Rare Disease Advocacy Experts

What is rare360?

 

A community-based program developed in collaboration with New Love Ventures, rare360 connects comprehensive rare disease experts to vetted rare disease focused industry stakeholders (i.e. digital health platforms, clinical research organizations, etc.). The comprehensive rare disease experts enrolled in the rare360 program are vetted, educated professionals that understand the importance of aligning industry goals and requirement with real world patient community incentives. Not every industry stakeholder will qualify to partner with the rare360 program. Subsequently, not every rare disease patient advocate qualifies as a comprehensive rare disease expert. 

Comprehensive Rare Disease Advocacy Experts

 

A comprehensive rare disease advocacy expert is a community-based advocacy professional with the experience and expertise required to navigate various rare disease communities, irrespective of disease specificity. Comprehensive rare disease advocacy experts have obtained a 360 perspective of the greater rare disease landscape and are morally bound to serve the best interests of the people that make up the global rare disease community. Comprehensive rare disease advocacy experts have the skill sets to acquire unadulterated community insights in a respectful manner, without exploiting any member of the rare disease community. Comprehensive rare disease advocacy experts have vowed to always serve the best interests of the rare disease community, while establishing mutually beneficial collaborations with rare disease focused industry stakeholders. 

Interested?

If you believe you have what it takes to partner as a digital health solution with rare360 or to enroll as a comprehensive rare disease expert, contact us to initiate the screening process.

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New Love Ventures

RAM has partnered with New Love Ventures to support the administrative needs of the rare360 program.

New Love Ventures, the creator of the New Love Human Culture trademark, is a novel Venture Philanthropy company determined to support initiatives that serve humanitarian efforts, in addition to supporting meaningful distribution of and access to resources, opportunity and the pursuit of happiness for humans of all types.​

New Love Ventures is also a partner of the "Our Lives Matter" DEI RAM Collaboration, a set of diversity, equity, inclusion programs dedicated to equitably diversifying clinical trials, the rare disease advocacy environment, and correcting racial healthcare disparities.

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The Rare Advocacy Movement (RAM) is a rare disease focused community advocacy initiative focused on addressing the issues that affect the real world people of the rare disease community.  RAM serves as a community-based professional network and Center of Insight (COI) for rare disease focused stakeholders seeking authentic connections and unadulterated community insights. The RAM membership is comprised of a network of patient advocacy community expert professionals that have vowed to abide by the established Code of Conduct for Membership. As a result, every current RAM member has made a public vow to always act in the best interest of the rare disease community.