The fair Market Value of rare disease Insights

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)
UPDATED MAY 25, 2021
UPDATED SEPTEMBER 1, 2022

The Rare Advocacy Movement has published the fair market value ranges, based on an hourly rate system, to ensure that all rare disease stakeholders confidently enter into ongoing, compliant, sustainable and mutually beneficial engagements and collaborations. Community-based insights, collected in a trusted, respectful and ethical manner, drive health care innovation and therapeutic development. To avoid unintentional exploitative practices it is imperative that all stakeholders be provided with the appropriate fair market value compensation for their time given their personal/professional network and lived-experience.

RAM aims to establish a sustainable community-based ecosystem by equipping those with lived rare disease experiences with contract templates, access to professional development tools, and the fair-market value (FMV) ranges for the various types of experts found across the advocacy and community based landscapes.

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 ecosystem as guidance towards developing sustainable programs, protocols and inclusive strategies.

Fair Market Value Ranges for Rare Disease Insights

The following are the FMV hourly rate ranges established by the FAIR MARKET VALUE FOR RARE INSIGHTS RAM COLLABORATION.*

* 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.

Rare Disease Market Research FMV

For Qualitative Studies: $200/hour
For Quantitative Studies: $100/hour

Please note that the appropriate time frame to process the payment of incentives post participation is 1-3 days.

Please also note that it is highly unethical for any biopharmaceutical manufacturer to request market research be conducted, whether internally or by a contracted firm, without compensating each participant at the FMV for their time.

A "Valued Participant" is defined as a person who participated in either a qualitative or quantitative study and their contribution is subsequently valued in the analysis of the overall study. All Valued Participants are ethically entitled to receive a FMV incentive. To not proceed with payment of honorarium for a Valued Participant is to exploit said participant for their insights and rob them of their valuable time.

It is highly advised that all participant facing material be reviewed by a community-based advocacy expert within the target disease-specific community (do not confuse 501c3 advocacy with community-based advocacy). Community-based advocacy is not always affiliated with 501c3 advocacy. It is imperative that a lived-experience expert conduct a content review of all documents including legal disclosures.

Rare360 does offer Content Review services for market research studies and the FMV per reviewer is $205/hour.

Rare Disease Conference Season (April - October)

How to calculate the market value total honorarium: Role + Type of Participant = Total Honorarium*

* Values only refer to honorariums and do not include any travel and lodging costs for in-person events. Travel and lodging costs should be covered by event organizer, not the expert participant.

Agreement Templates

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.

Speaker Authorization Form

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.

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.