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Women in RARE: Next Gen: Jessie Birnbaum

Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine

About you

Jessie Birnbaum holds a bachelor's degree in psychology from Wake Forest University and is currently attending the School of Social Work at Boston University. She spent over three years searching for a diagnosis after experiencing numerous life-altering symptoms and getting misdiagnosed.

After hours of personal research, travelling three states and meeting dozens of medical professionals, she was diagnosed with two rare conditions: mast cell activation syndrome and BASCULE syndrome—as well as a host of other chronic illnesses. She is involved with Rare Youth Revolution and YARR (Young Adult Rare Representatives) to advocate for individuals with rare conditions.

Most recently, she participated in Rare Youth Monologues at the Rare Fair. Additionally, she co-founded the Chronic Illness/Disability Special Interest Group through the International OCD Foundation to form a community for those with chronic illness, undiagnosed and rare conditions, and obsessive compulsive disorder (OCD). She has given multiple conference presentations on OCD and medical illness.

Your biggest motivation

Seeing the many hoops individuals have to jump through to receive quality care and be validated.

Your greatest achievement

Starting a Special Interest Group through the International OCD Foundation for individuals with chronic medical conditions and OCD. I was told that the subject was too niche, but we have 175+ individuals on our sign-up list to date!

What’s next to strive for?

Educating more people on rare disease and advocating for research funding.

Advice to other up-and-coming advocates

Don’t be afraid to reach out to others and share your story—it matters!

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

Medical professionals and individuals alike acknowledge the collective suffering and frustration of rare disease.





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