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Writer's pictureLilly Grossman

Women in RARE: Next Gen: Lilly Grossman

Updated: Aug 15




About you


Lilly Grossman is a passionate and dedicated advocate for both the disability and rare disease communities. Lilly has a rare genetic condition called ADCY5 movement disorder, which causes her to have a physical disability and use a wheelchair to get around.

She is a 2019 alumna of Whittier College and currently lives in southern California. She is earning a Master of Arts in Clinical Psychology from Pepperdine University Graduate School of Education and Psychology and dual licensure as a Licensed Marriage & Family Therapist, and plans on obtaining a Licensed Professional Clinical Counselor. Lilly has held internship positions at various disability and rare disease advocacy organisations including Undiagnosed Diseases Network Foundation (UDNF), Disability:IN, Global Genes, RespectAbility and Illumina.

Lilly enjoys sharing her experiences as a young woman with a disability through her writing. She hopes to show the younger generation what is possible by being a positive role model.


Your biggest motivation


My biggest motivation is helping the younger generation by figuring things out so that they don’t have to face the same challenges and obstacles.


Your greatest achievement


My greatest achievement to date is becoming the person who I needed when I was younger.


What’s next to strive for?


I am in the process of earning a Master of Science in Clinical Mental Health Counseling.


Advice to other up-and-coming advocates


Find your community and connect with people who “get it” as soon as possible.


The tide will have turned for the rare disease community when...


The community recognises that children with rare diseases often become adults with rare diseases. Having a rare disease doesn’t just stop once you turn 18.


 

Socials

Instagram: @Lilly_Grossman

Facebook: Lilly Grossman

LinkedIn: Lilly Grossman


 



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