Slc6a1 Connect

My first ever Rare Advocate Development Workshop was incredible.

The workshop equips parents with the tools to become effective advocates for their loved ones, engage meaningfully with scientists, clinicians, regulators, and industry, and confidently speak about their disease journey in public settings. It honestly felt like an honorary PhD in rare disease advocacy. I only wish something like this had existed 7 years ago when the SLC6A1 Connect journey began.

One of the most powerful parts of the rare disease community is the culture itself. We celebrate each other’s victories, stand beside one another during losses, and continuously pay knowledge forward to the next family walking through the door.

Grateful to everyone who helped create such a meaningful experience and to every advocate brave enough to share their story.