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RAM Members lobby

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.​ 

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 RAM membership are invited to apply.
 

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

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

 

Finally, RAM Membership is not required to participate or contribute to any RAM Collaboration. If you see a RAM Collaboration 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 collaboration request(s) and/or proposal(s) for any reason.


Please Note: RAM Membership does not automatically grant access to any RAM-powered server. RAM Membership is not required to participate or contribute in any RAM Collaboration, initiative, or program. 

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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 2017-2024. Rare Love Ventures. All rights reserved in partnership through RARE360.

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