Rare disease advocates of all varieties report being undervalued and/or exploited by at least one rare disease stakeholder within the past decade.
(Year of reference is 2020)
The Rare Advocacy Movement wants to ensure that all rare disease stakeholders confidently enter into ongoing, compliant, sustainable and mutually beneficial engagement efforts. Unadulterated rare disease insights, collected in a trusted, respectful and high-quality manner, effectively drive health care innovation.
The FAIR MARKET VALUE OF RARE DISEASE INSIGHTS RAM Collaboration aims to establish a sustainable patient advocacy ecosystem by equipping the rare disease expert community with contract templates, access to mentorship, and the fair-market value (FMV) ranges for the various types of experts in the rare disease community.
Please note that the resources made available on this site are regularly updated as market trends fluctuate. All resources are offered to the rare disease community as guidance towards developing sustainable agreements.
Fair Market Value Ranges
The following are the FMV hourly rate ranges established by the rare disease collective.*
* FMV Ranges are based on individuals at a high school/college graduate level. FMV Ranges increase with advanced post-graduate degrees. Contact us to obtain the FMV Range for a type of expert with a post-graduate degree.
The follow are templates for common agreements made with rare disease advocates, patients, caregivers and care partners. RAM does not accept any legal liabilities for how, when or by whom the agreement templates provided herein are used.
The prevalence of virtual conferences during this COVID-19 era has changed the conference landscape and has made community insights even more vulnerable to exploitation. The Speaker Authorization Form is designed to prevent the exploitation of rare disease community advocates, patients, caregivers and care partners pre-recorded presentations. Every speaker has a right to protect their personal stories and experiences from being owned and used perpetually by event organizers. The Fair Market Value Ranges should be referenced when negotiating honorarium/compensation.
Looking for another type of contract template? Let us know so that we can work on making it available for the rare disease community. Contact us.
This RAM COLLABORATION is hosted by the following RAM members:
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".
RAM publications shall not be construed as legal advice on any specific facts or circumstances. The contents are intended for general information purposes only and may not be quoted or referred to in any other publication or proceeding without the prior written consent of a representative or member of the Rare Advocacy Movement, to be given or withheld at our discretion. To request reprint permission for any of our publications, please use our "Contact Us" form, which can be found on our web site at www.RareAdvocacyMovement.com. The views set forth herein are the personal views of the authors and do not necessarily reflect those of the the other members of the Rare Advocacy Movement.