When the Kitchen Table* Meets the Deal Table
In rare disease M&A, a lot of what the acquirer is buying was built at the kitchen table. This explores what it could look like for those tables to get shoved together.
This piece is for people who don’t know a lot about deals (like me) but do know a lot about what rare disease companies build with patients and want it to be durable after an acquisition.
Rare disease acquisitions are working. The deals close, the acquirers hit their models (sometimes), and the deal value in this category nearly tripled between 2019 and 2022, from $18.9 billion to $50.6 billion. Capital is moving into rare disease for sound reasons: orphan drugs are projected to account for roughly 20% of prescription drug sales by 2026, the regulatory environment increasingly rewards patient-experience-informed development, and small biotechs are producing assets that larger companies are well positioned to scale.
What is also happening, and what matters more for this piece, is that the upstream infrastructure around the kitchen table is visibly building. 1000 Cures operates as a distributed accelerator funding family-founded rare pediatric disease companies. Buffalo Initiative just launched the first public pipeline tracking therapeutic programs led by patient groups, explicitly framing them as “a legitimate asset class.” RA Capital’s Peter Kolchinsky has spent years writing the Biotech Social Contract, naming patient communities as the rightful holders of the moral and economic argument for innovation. Third Rock Ventures has been public for over a decade about community-led work driving deal value, most visibly in the Lotus Tissue Repair build where work with DEBRA tripled the prevalence estimate ahead of the Shire acquisition. The smartest capital in rare disease has already named the value at the kitchen table. The deal apparatus that absorbs these companies later has not caught up.
I see these deals from three angles. From the patient communities we work with, who experience the acquisition as something that happens to them. From the small biotechs we support, who get scooped up. And from the larger acquirers, who do the scooping. I’m not a deal maker and not a financial person. But from where I sit, there is value being left on the deal table that all three sides could be capturing, and the place where it gets left has a name and a structural address.
What’s in the deal documents, and what isn’t, we think
When a company gets acquired, the deal structure is what turns the transaction into a durable arrangement. It has three connected layers: diligence (the workstreams that evaluate what is being bought), deal terms (the binding agreements, like covenants, earn-outs, and retention packages), and post-close governance (how the terms get operationalized). Diligence findings shape deal terms. Deal terms create obligations integration enforces. When something gets flagged in diligence, it can end up in a covenant or an earn-out, and the integration team has a mandate to protect it.
The community side of a rare disease company shows up inside these layers in fragments, mostly never as itself. Commercial diligence sees market sizing. Regulatory diligence sees PFDD evidence. Clinical diligence sees enrollment metrics. Each is a real piece of the picture; none of them is the picture. The registries, the advocate-co-developed endpoints, the steering committee relationships, the trust the small biotech built with families over years: all inherited operationally, none of it contractually. Things outside the deal apparatus get held by people, and people leave, get reorganized, or lose their discretion. What was promised at close becomes work that has to be argued for, every quarter, usually (sorry it’s true) against the parent company’s normal operations. The value lost when those arguments are not won is incremental, and almost always invisible at the level of any single deal. Aggregated across the category, it is part of what Levine and Stemitsiotis and EY-Parthenon describe when they document the gap between what these deals could be worth and what they end up being worth. EY found that roughly 70% of acquired early-stage biopharma assets do not meet their original deal expectations.
Why are acquirers always surprised?
We ask ourselves this question when the buying company joins a normal patient council group or meets an advocate for the first time and we get texts like “omg they know so much about [insert specialized thing here valuable to the business.]” Correct.
That is a tell that the current diligence has a blind spot. The acquirer’s team meets the patient community for the first time and is visibly surprised by what they encounter: the depth of the science, the granularity of the regulatory knowledge, the fact that the mother who runs the foundation knows the FDA pathway better than the BD lead does. Acquirers experience this as a pleasant discovery. Deal teams are, usually, built from generalists who evaluate many therapeutic areas; rare disease communities are made of specialists who know one. Scarcity concentrates expertise. A community of 1,500 patients is denser, more organized, and more expert at every level than a community of 1.5 million because it has to be, and has often been doing the science longer than the company has existed. The natural history study was funded by the foundation before any pharma showed up. The endpoint was developed by the community because no one else cared enough to develop one. If diligence worked, the acquirer is the value gap in legible form.
What this could look like as a deal
In diligence, the community side could get a workstream whose deliverable is dependency analysis rather than stakeholder mapping. It traces how the asset’s value runs through the community and identifies what the acquirer would lose if any piece failed: which patient organizations co-developed which endpoints, which registries the company funds, where the trust concentrates in which people, what is durable and what would not survive a leadership change. Mirum Pharmaceuticals has described conducting patient advocacy outreach during asset acquisition diligence. So, the practice is feasible. The argument is for making it standard in a way that preserves the community in deal terms.
In deal terms, the commitments worth protecting actually get protected. Registry funding written into post-close covenants. Retention packages for community-facing personnel that preserve the authority they had, including decision rights on funding and direct lines to senior leadership. Advocate-co-developed endpoints carried into the next indication. Community-rated continuity metrics tied to earn-outs. These are the same instruments deal lawyers already use to protect every other operational dependency, rarely pointed at this category. We know this because we help clients who have gotten scooped fight for these things long after Day 1 after close.
In post-close governance, the commitments to the community get tracked the way any other inherited operational commitment gets tracked: named owners, review cycles, leading indicators on things that currently surface as performance problems two years after close.
One objection
The community side is genuinely hard to diligence. The information is qualitative. The dependencies are personal. The relevant people may not want to talk to a deal team they have never met. Any commitment baked into deal terms creates exposure. These are things we must move carefully on however they are not reasons to keep the work where it currently lives. Qualitative information is what regulatory and commercial diligence already work with. The trust problem points to who does the work: people the community can already trust, who can hold both sides of the conversation. Exposure is a function of how terms are conceived and written; tying them to specific operational outputs carries less risk than tying them to outcomes the community itself controls.
There are probably others like if it’s really important enough to the deal it’s already protected, I don’t buy this but let’s fight about it. Send me an email: alix@assemble-health.com
What changes
For acquirers, dependencies surface during diligence that currently surface as performance problems two years later. For small biotech patient leaders, the case for protecting what your community built stops depending on the goodwill of the deal team and starts depending on the deal documents. For patient communities, what survives the acquisition expands. The company that was acquired does not survive, and pretending otherwise has always been part of the problem. The conditions under which their relationships, their data, their endpoints, and their access continue to be funded and protected can.
The work belongs where the rest of the dependency protection already lives.
“Kitchen table” is shorthand. Rare disease wins start with passionate people up in the middle of the night making it happen, often without titles, formal authority, or anything resembling a budget.
Further reading
De-risking rare disease acquisitions, Levine and Stemitsiotis, Nature Reviews Drug Discovery, 2023. The closest scholarly argument to this one. They identify the gap between what rare disease acquisitions could be worth and what they end up being worth, and name integration as a key driver.
Pre-commercial acquisition integration in biopharma, EY-Parthenon. The empirical anchor for the value-gap claim.
Patient-Powered Drug Trials Are Getting The FDA Greenlight, Sunitha Malepati and Craig Lipset, Buffalo Initiative, March 2026. The contemporary piece closest to this argument in spirit, arguing patient-led drug programs are a legitimate asset class and naming visibility as a prerequisite for investment.
FDA’s Patient-Focused Drug Development guidance series. The clearest signal that community-generated evidence is now load-bearing in approval and access decisions.