the first Community-based stakeholder collaboration zone

The first Community-Based Stakeholder Collaboration Zone will be taking place at the WORLD EPA CONGRESS

Published on February 28, 2020
Updated on March 5, 2020

The World Evidence, Pricing and Access (EPA) Congress is the event not to miss in 2021. Not only can advocacy professionals apply for complimentary VIP guest access, but this event will be hosting the very first Community-Based Collaboration Zone, a two hour event curated by the Rare Advocacy Movement.

As if that wasn't enough excitement, the unveiling of RAM's exclusive estate, developed by the Adults Living Rare Initiative, will be introduced to industry-based, academic-based and advocacy-based stakeholders (because community-based stakeholders are already in the know) as the much anticipated grand finale of the World EPA Congress, scheduled to air on April 15, 2021, 13:00 Central European Time.

Here is a break down of the must attend sessions that are happening at the World EPA Congress:

  • On Wednesday April 14, 2021, during the patient advocacy track at 13:40 Central European Time, Dawn Ireland will be chairing a panel discussion that will explore what can be done to improve collaborations between patients and biopharmaceutical industry members.


  • On Thursday April 15, 2021, the first Community-Based Stakeholder Collaboration Zone will launch at 13:00 Central European Time and will run for 2 hours!

Stay tuned for the finalized full two hour agenda, scheduled to publish with RAM's March, 2021 Living RARE News release.

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...AND It Gets even better!

Date: April 15, 2021

Time: 6:00 PM EST

The COVID-19 pandemic has deprived the industry of the best part of going to a conference ... the afterparties.


We are right there with you. We also miss all the free SWAG! All the free drinks! All the free tote bags! 

So, we had to do it. We had to bring the afterparty back! So if you are a community-based, industry-based, academic-based, or advocacy-based stakeholder in the rare disease space then you are cordially invited to RSVP to the very first Living Rare Afterparty. 

To answer the first question that is probably on your mind ... yes, this party is virtual. But don't let that discourage you! We are here. We are RARE...and quite honestly, we ARE the party.



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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.