An Open Letter
To the rare disease community, caregivers, healthcare professionals, and anyone who has ever felt alone in their struggle:
When someone you love receives a rare disease diagnosis, the world shifts beneath your feet. In an instant, every assumption about the future — every plan, every dream — is called into question. And in that moment of profound disruption, what most families discover is a healthcare system that, while remarkable in its medical capabilities, is woefully inadequate in addressing the emotional devastation that accompanies the diagnosis.
I know this because I have lived it.
A few years ago, my family received a rare disease diagnosis that changed everything. As I searched desperately for emotional support — someone who understood, someone who could help us process the grief, the fear, the overwhelming uncertainty — I discovered something shocking: it barely existed.
The emotional support infrastructure for rare disease families in the United States is fragmented, underfunded, and in many cases entirely absent. Insurance rarely covers it. Therapists with relevant expertise are almost impossible to find. Waitlists stretch for months. And for families in rural areas or underserved communities, the situation is even more dire.
The Gap We Must Close
Consider the reality: a family receives a devastating diagnosis. They are told their child has a progressive, life-limiting condition. They are given medical protocols, specialist referrals, equipment prescriptions. But when they ask "Where can I talk to someone about how this feels?" — the answer, far too often, is silence.
This is the gap that Somebody To Talk To was created to close. Not with a temporary patch, but with a sustainable, scalable model that makes professional emotional support as accessible as the medical care that rare disease families already receive.
What We Believe
We believe that emotional support is not a luxury — it is a medical necessity. We believe that no family should have to navigate a rare disease diagnosis without professional emotional support. We believe that cost should never be a barrier. That geography should never be a barrier. That stigma should never be a barrier.
And we believe that with the right technology, the right professionals, and the right commitment, we can build a world where every rare disease family has somebody to talk to.
A Call to Action
If you are a rare disease family — you are not alone. Our sessions are free, our facilitators are professionals, and our doors are always open. Join us.
If you are a healthcare provider — consider the emotional wellbeing of your patients and their families as an integral part of the care plan. Partner with us.
If you are a funder, a philanthropist, or someone who believes that compassion and accessibility should define our healthcare system — support us. Every dollar helps us reach another family that is suffering in silence.
Together, we can ensure that no rare disease family ever has to face their journey alone.
With gratitude and determination,
David Gusick
Founder, Somebody To Talk To
Our Goal is to bring emotional support on a global scale to every rare disease family that needs it — free of charge, without barriers, and with the professionalism and compassion that every family deserves.