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Collaborate foR Rare Lives

identifying challenges & eliminating bottlenecks for progress

The Collaborate for Rare Lives survey has been developed in order to gain a better understanding of the challenges that patient advocacy groups face within the rare disease advocacy environment that create hurdles to bringing treatments and cures to market. 

 

In an attempt to identify solutions vital to removing hurdles and building collaborative bridges amongst community-based stakeholders, the Rare Advocacy Movement (RAM) has created the Collaborate for Rare Lives survey.

The survey will generate insightful information in which RAM will use to help inform public discussions regarding the unification of patient advocacy groups, and raise awareness of the challenges that patient advocacy leaderships face when serving the patient community. 

All patient advocacy leaders and group founders involved in the nonprofit sector are invited to take part in the survey to share their thoughts and experiences. You have the option to choose to remain anonymous. You also have the option to get more involved at the end of the survey. The survey should take no more than 15 minutes to complete. 

 

Once you complete the survey, please share the survey link with others patient advocacy professionals, organizations and social media networks. Thank you.

RAM is a rare disease community leadership network founded on the premise of developing mutually beneficial collaborations between rare disease community leaders, influencers, experts and other rare disease stakeholders, with the goal of developing insightful publications dubbed RAM Collaborations. 

RAM removes toxic competition amongst community-based rare disease leaders, influencers and experts and replaces it with support, camaraderie and mentorship as patient advocacy professionals navigate the drug development continuum, regardless of which disease specific community one originally belongs to.  The RAM network encourages unity, collaboration, professionalism and support amongst the membership, embracing the concept, "a win for one is a win for us all".   ​

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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.