Develop a strategy for a fee-for-service advisory model for a rare disease organization

CureSHANK is seeking a skilled volunteer to help us develop a plan for a fee-for-service advisory model.

As a trusted source of expertise about Phelan-McDermid syndrome/SHANK3, CureSHANK’s input is frequently sought by biotech and pharmaceutical companies. To date, we’ve provided this guidance pro bono as part of our mission to accelerate drug development.

Demand is growing - requests are becoming more frequent, more complex, and more time-intensive than our small team can sustain. To continue supporting companies effectively - and ultimately improve outcomes for patients - we need to bring in additional experts and create a financially sustainable structure.

We’re looking for a volunteer who can help us:
-Assess what the market is willing to pay
-Build a pricing strategy that reflects true costs
-Identify potential risks (compliance, liability, conflicts of interest) and design safeguards
-Create a written implementation plan

We see the fee-for-service advisory model as vital. Without it, our capacity to effectively support companies would be limited, slowing progress toward our mission.

Phelan-McDermid syndrome is a rare genetic disease strongly linked to autism, intellectual disability, and epilepsy, with a high degree of unmet medical need. It is a profoundly disabling condition that impacts quality of life of patients and their families.

Your expertise will directly help us build capacity, engage more industry partners, and accelerate the path to treatments for our patients.

In preparation for the project
-We have received executive leadership support
-Will make our CSO and president available for consultation
-Will share materials we have gathered from peer organizations

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We propose presenting the implementation plan to the full board of directors for final approval at the end of October and activating the plan immediately thereafter.