We are rare.

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Rare Advocacy Movement (RAM) is the first community-based network of professional activists and allied advocates dedicated to protecting the interests of the global community of people living with rare conditions, life altering disabilities, medical complexities, and their families.

Committed to transparency, RAM collaborates with trusted, dedicated, and allied stakeholders to support and drive dissemination of news, information, resources, programs and so much more for patients, caregivers, care partners and families impacted by chronic, debilitating rare health conditions.

RAM was strategically designed to address the critical unmet needs of the global rare disease community. With lifesaving scientific discoveries being developed across the rare and complex disease ecosystem, RAM is dedicated to bridging gaps, addressing life threatening silos and bottlenecks and centralizing patient quality of life across the healthcare landscape.

If you have questions after exploring RAM's site, please do not hesitate to contact us and request an introductory call.

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RAM is a decentralized autonomous organization (DAO) dedicated to serving the rare disease community-based landscape. RAM's treasury is held and managed by Rare Love Ventures (as of 2023). RAM operates in fiscal partnership with rare disease focused 501(c)3 organizations, allowing for its respective community-based initiatives and programs to operate as tax-exempt nonprofit charities, a model developed by RAM's founder Nadia Bodkin, to prevent the duplication of 501(c)3 advocacy-based activities.

RAM is the first global community-based network dedicated to protecting the interests of the people living with rare health conditions, chronic & progressive disabilities, medical complexities, and their caregivers, care partners and families.

RAM is a 3 phased global movement representing a unified rare disease patient and carer (includes caregivers and care partners) ecosystem that works through specialized collaborations across the globe, to address the mutual needs of the patient and carer communities, from the community-based perspective (notably an express difference from the advocacy-based perspective).

RAM is committed to transparency, the empowerment of patients and their families living with chronic rare diseases, the correction of harmful systemic biases and assumptions, the dissolution of siloed patient-dedicated resources and the removal of harmful bottlenecks from the rare disease ecosystem. RAM's goal is to pave a community-based path for people living with rare medical conditions to have equitable access to opportunities to thrive.

RAM's democratic governing structure and public benefit business model is strategically designed to support the 501(c)3 patient advocacy-based landscape, while empowering the community-based landscape to allow for an overall cohesive evolution of the healthcare industry and therapeutic development ecosystem.

RAM is a three-phased global movement which will not only uplift the people of the rare disease community, but will show the world the power and beauty behind accepting and respecting human variation.

We are rare.

Rare Advocacy Movement (RAM) is the first community-based network of professional activists and allied advocates dedicated to protecting the interests of the global community of people living with rare conditions, life altering disabilities, medical complexities, and their families.

RAM is a three-phased global movement which will not only uplift the people of the rare disease community, but will show the world the power and beauty behind accepting and respecting human variation.

More about RAM