rare360

Comprehensive Rare Disease Experience Experts

What is rare360?

rare360 is a program hosted by the Adults Living Rare Initiative, effectively connecting rare disease - focused industry-based stakeholders authentically dedicated to developing trusted relationships in the community-based rare disease environment. 

An extremely selective program, industry-based stakeholders that qualify as a rare360 partner, must be authentically dedicated to improving the lives of community-based rare disease people. 

Comprehensive Rare Disease Experience Experts

 

The current rare disease advocacy community is siloed, only representing the voices of the privileged. When comparing the real world rare disease landscape, it looks very different to the rare disease advocacy community.

 

The perspectives, incentives and goals of the real world rare disease community also looks very different to rare disease advocacy, because it is in constant flux. The advocacy environment is significantly slower moving when compared to the real world community. In fact, the advocacy community has approximately a 9-14 month lag behind the real world landscape. And upon finally catching up, a 6 month learning period that requires that they socially listen to a community that is now moving onto the next trend. 

The advocacy space has grown dated and detached. As a result, research and development has suffered significantly. The real world people of the community feel exploited and dehumanized. The real world landscape has grown disinterested with the advocacy space, organized and professionalized to offer mutually beneficial solutions that finally benefit the real world people of the community, as well as industry-based stakeholders.

 

The rare360 program is exclusive to the RAM network. A system of vetting has been established that allows for the identification of comprehensive rare disease experience experts that are then paired as independent consultants to offer valuable insights and guidance to organizations and companies that are trusted rare360 partners.

 

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.

Designed to protect and serve the best interests of people living with rare diseases, their caregivers and their care partners, while facilitating the development of mutually sustainable collaborations between human-focused rare disease stakeholders, the rare360 program is built on the premise of trust, transparency and mutual dedication to the improvement of quality of life for the naturally diverse people of the rare disease community.

New Love Ventures

RAM has partnered with New Love Ventures to support the legal and 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 equitable distribution of and access to resources, opportunities and the pursuit of happiness for people of all varieties.​

New Love Ventures is also a partner of the "Our Lives Matter" DEI initiative, a collective of diversity, equity, inclusion (DEI) programs dedicated to addressing equitable diversification of clinical trials, the rare disease advocacy environment, and correcting racial, LGBTQI+, and disability healthcare disparities.

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The Rare Advocacy Movement (RAM) is a novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community.  RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source. Each RAM member has made a public vow to always act in the best interest of the rare disease community by abiding by the Code of Conduct for Membership. Those who violate the Code of Conduct for Membership risk removal from the RAM membership and access to the global network via majority vote.