Jillian Arnold
Speaker, Author, Podcast Host, Advocate, Confessions of a Rare Disease Mama
Jillian Arnold is listed as Speaker, Author, Podcast Host, Advocate, Confessions of a Rare Disease Mama. Jillian is scheduled to speak at Advanced Therapies Week 2027 on 18 January 2027.
Compiled from published conference agendas; not yet confirmed by Jillian. Is this you? Claim this profile.
About
Jillian is a wife to her partner, Donald, and a mother to her two children, Roman and Stella, who both suffer from an ultra rare and life limiting genetic disorder, ASMD (Acid Sphingomyelinase Deficiency or otherwise known as Niemann Pick Disease Type A/B). Their son was born September 2018 and was diagnosed with ASMD in May of 2019 and their world's were completely flipped upside down. ASMD is a progressive multi-system genetic disease that can lead to an early mortality. There is no known cure, but there are some promising treatments in the works. It primarily affects the liver, spleen, lungs and in the most severe cases (like that of her two children), it causes a rapid nuero-degeneration in the brain similar to a baby Alzheimer's.
Upcoming
Advanced Therapies Week 2027 19 January 2027 – 21 January 2027
- Fireside chat: Jillian Arnold Speaker · 18 January 2027
- Patient Plenary Speaker · 18 January 2027
- Live podcast: Confessions of a rare disease mama Speaker · 19 January 2027
Spoke alongside
People who have shared a session with Jillian at events on B2DB.
- Caryl Harris Co-Founder and Executive Director · Avery's Hope 2 shared sessions