Make rare voices heard
Patients, caregivers, clinicians, researchers, nonprofit leaders, and advocates share knowledge that is too often missing from ordinary conversations.
INDEPENDENT FEATURED RESOURCE
Rare Connection
Joanna Ball is making rare voices louder—and helping people discover that they are not alone.
85episodes
100countries reached
10international episodes
Season 7in its fourth year
MEET JOANNA BALL
Lived experience turned into connection.
Joanna lives with Homocystinuria (HCU), a rare inherited metabolic condition. She also spent 13 years working as a caregiver with Oregon’s home-care system.
Her advocacy grew from firsthand knowledge of how isolating a rare condition can be—and how difficult it is to find people who understand. In 2024, HCU Network America recognized that work by naming her its first HCU Champion.
Rare Connection began as Nutrition Equity, focused on conditions affected by access to medical foods and formulas. It later expanded to include the stories, science, research, and people across the wider rare-disease community.
MORE THAN A PODCAST
Connection. Education. Clinical trials.
Joanna’s work continues beyond the microphone.
Connect people
Joanna helps patients find organizations, support groups, advocates, and other people who may understand their condition.
Open doors to information
The show explores research, clinical trials, emerging treatments, policy, diagnostic journeys, and the realities of daily life with rare disease.
“Nobody is alone, no matter how rare their disease is.”
That belief is what makes Rare Connection such a natural resource for the families Rare Hope Project hopes to serve.
LISTEN · WATCH · CONNECT
Help Joanna’s work travel farther.
Subscribe, share an episode, or send Rare Connection to someone who needs to hear a voice like theirs.
Rare Connection is an independent external resource. Rare Hope Project is grateful for Joanna’s openness to collaboration and proud to amplify her work. Podcast content is educational and does not replace medical advice.