“Nobody cares how much you know until they know how much you care.”  

— Theodore Roosevelt

Over time, those of us who are directly affected by a rare disease develop a “sixth sense.” Whether we are a rare disease patient, close family member, or caregiver, we become quite adept at identifying people who truly care about us and our well-being – and we also become adept at figuring out who is interacting with us for a different reason.   

Thirty years ago, when our baby, Jack, was diagnosed with an untreatable rare disease called spinal muscular atrophy (SMA) and given a year to live, I naively believed that anybody and everybody who had chosen to be involved in our baby’s life – health care providers, nursing agencies, medical supply companies, wheelchair vendors, and even the “special needs coordinator” at our health insurance carrier – genuinely cared about our baby and about our family. 

As the years passed, I learned the hard way that not everybody involved in Jack’s care truly cared about our son. Some providers were distracted by financial, legal, or administrative issues, and a few were clearly motivated solely by self-interest.  Over the years, my perspective shifted from naivety, to disillusionment, to, at times, cynicism and distrust. Patients and family members with years of experience in rare disease develop a very sensitive antenna, a type of “sixth sense,” that allows us to very quickly sort out who truly cares about us – and who doesn’t. 

Our “sixth sense” becomes wired into us individually, but as rare disease communities the “sixth sense” works at a collective level, too.  

Three decades have passed since I became the Dad of a child affected by a rare disease. Thankfully, with the passage of time has also come the introduction of very effective treatments for SMA and many other rare diseases. Biotech and pharmaceutical companies are now interacting with rare disease advocacy organizations regularly. As a psychologist specializing in rare disease, I am often asked to consult with industry partners as they navigate new and often complicated relationships with rare disease advocacy organizations.

In my professional role, I’ve observed a broad range of approaches taken by industry partners – with a broad range of results. In my view, what separates the companies that truly partner with rare disease communities to make a substantive, meaningful difference – from companies that don’t – is a rare disease community’s collective “sixth sense,” which translates to this question:

Does our industry partner genuinely care about our rare community, not only with words but with actions? When industry partners demonstrate they genuinely care about a community of patients and families who are struggling with the challenges of a rare disease, they earn our collective trust. Earning trust takes time, resources, intentionality, and most importantly, a culture of genuine caring that starts from the top.

Trust isn’t earned through marketing campaigns, unbranded websites, or advisory board meetings alone. In our rare disease communities, trust is built over time through presence, partnership, purpose, and industry partners who genuinely care about the patients and families they serve. 

In my professional experience, to earn the trust of our rare disease communities, industry partners need to understand that:

• Patients affected by a rare disease can’t do things the same way everybody else does; our families are forced to adapt in unusual and creative ways in order to live their lives. Rare disease patients have to do things differently than the general population, so it stands to reason that to serve our rare communities effectively, industry partners need to be open to employing a very different model than the “big pharma” model that serves the general population. The “big pharma” business model doesn’t work with rare disease patients, caregivers, health care providers, or communities.

• Patients affected by rare disease need and place a high value on continuity of care. Rare communities do, too. The typical big pharma business model includes an extraordinarily high amount of turnover amongst its employees.  Industry partners whose employees develop relationships with rare communities can only build trust if the relationships are sustained rather than interrupted. Rare disease communities are in this for the long haul; industry partners need to be, too.

• Patients affected by rare disease place a high value on care providers who are reliable and “there for them.” It’s important for industry partners to engage with communities before there is a product or study — and stay. The process of building trust starts before a clinical trial. Industry partners need to stay connected to our rare communities consistently and with a spirit of true reciprocity – and because they genuinely care. One well-known rare disease advocate put it this way, “Don’t come to our community only when you need something. Show up when it’s inconvenient for you and when it matters most to us.” In short, it’s important for industry partners to invest in the community and not only the science.

• Patients affected by a rare disease, and their communities, experience many ups and downs. So does the drug development process. Industry partners need to communicate transparently about timelines, risks, successes and setbacks; silence erodes trust. It’s also important to address access and affordability early on because if patients can’t access your treatment, trust disappears quickly. Having the trust of a rare community becomes even more important when challenges arise. Regulatory challenges, payor issues, and adverse events can strain and test relationships between industry partners and rare communities. Industry partners with strong and trusting relationships with rare communities are much more likely to successfully overcome challenges when tested by unforeseen external forces and events.

• Patients affected by rare diseases and their communities are very knowledgeable and highly educated about their conditions. Industry sponsors who do not value and utilize the knowledge of the patients and communities are experienced by rare communities as sponsors rather than true partners. The Executive Director of a well-established rare disease advocacy organization once summed up the reason her community did not trust an industry sponsor when she told me, “They don’t ask, and they don’t listen.” In other words, if the industry partner doesn’t genuinely care about the perspectives, knowledge, or ideas of our community members, why should we as a rare community trust them?

• Patients affected by a rare disease, and their communities, know the difference between superficiality and authenticity. They know the difference between words and actions. They know the difference between buzzwords like “patient-centricity” and programs that actually put the patient first. In my professional experience consulting with industry partners in rare disease, I have actually observed an inverse relationship between the frequency of the use of the phrase “patient centricity” and substantive, patient centered actions. Are you as an industry partner truly putting yourselves in the shoes of the community you’re serving? Are you supporting community-led projects, caregiver resources, diagnostic initiatives, or family support programs – beyond your pipeline treatments themselves?  Authenticity and genuine caring build trust. Superficiality and buzzwords sow the seeds of cynicism. In short, you can’t fool us; our collective “sixth sense” sniffs out superficiality within seconds.

Most importantly, industry partners need to remember that patients and families affected by rare disease feel a sense of urgency every single day, a burden which lands squarely on the leaders of rare communities. The stakes are personal for patients, so to be true partners, industry professionals need to approach their work with humility, understanding and respecting the emotional and physical toll of rare disease. Always lead with empathy, honesty, and genuine caring.  The collective “sixth sense” of rare disease communities knows, appreciates and trusts industry partners who engage meaningfully and collaboratively.  

Trust is a long game. For rare disease communities, it starts with being human first.

More from Dr. Al

Keepin’ It Rare: Let’s Talk Therapy with Dr. Al Freedman

At Bionews, Trust Isn’t Just a Goal. It’s Our Foundation.

Dr. Al’s insights reflect what we see every day across the rare disease communities we serve: trust is built through authenticity, consistency, and care. At Bionews, we have spent more than a decade earning that trust. Not through slogans or short-term campaigns, but through daily connection, lived understanding, and an ongoing commitment to patients and caregivers navigating rare conditions.

We are more than a news source. We are a network of condition-specific communities where rare disease patients come for answers, find support, and return for the clarity and connection they cannot find anywhere else. With over half of our team living with or caring for someone with a rare disease, we bring a level of insight that resonates deeply with the people we serve.

This is why pharmaceutical companies choose to work with Bionews. The rare disease communities we serve do not just read our content. They trust it. And when the goal is to share research, introduce treatments, or drive real engagement, that trust becomes the most valuable asset of all.