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PUBLIC RAM Members

RAM's network consists of a unified group of global community-based activists, lived experience experts, and community-focused advocacy, academic and industry allies, all of whom have a special interest in solving issues that impact the rare disease, disability, and neurodiverse communities.​ 

Public RAM Members are a unique group of advocacy professionals who have made a public commitment to serve and protect the best interests of the patient and carer community through the Code of Conduct for Membership
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Community-based activists and community-focused advocates and allies interested in joining the Public RAM membership are invited to apply.
 

Public RAM Membership represents one layer of a complex democratic governing structure. For those who designate themselves as former RAM Members and/or affiliates, please note that former membership/affiliation does not grant any individual with decision-making power, voting rights or internal access to RAM and its affiliated programs.  

Additionally, being a Public RAM Member does not automatically grant access to the proprietary insights, assets, or revenue stream of any existing RAM Collaboration, Initiative, and/or Program. Each RAM Collaboration/Initiative/Program is governed by the established guidances of RAM and any additional governing terms incorporated through the collaboration's governing parties.

 

Finally, Public RAM Membership is not required to participate or contribute to RAM. If you see a RAM Collaboration, Initiative, and/or Program that interests you, please do not hesitate to connect with us or to discuss the development of other potential collaborations.
 

RAM reserves the right to reject any request(s) and/or proposal(s) for any reason.


Please Note: Public RAM Membership does not automatically grant access to any RAM-powered server

Member's Lobby Directory

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The Rare Advocacy Movement (RAM) is the first sustainable rare disease community-based network designed to unite and empower people with lived rare disease experiences.  RAM is dedicated to protecting the fair market value of the community's perspectives, insights and experiences (PIE). All RAM members vow to always act in the best interest of the global rare disease community by abiding by the Code of Conduct for Membership. Violations of the Code of Conduct for Membership shall result in resignation from the RAM membership via majority vote. For those not yet ready for RAM Membership, partnerships and trusted stakeholder options are available through Rare360.

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© Copyright 2017-2025. Rare Love Ventures. All rights reserved in partnership through RARE360.

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