Why Rare Disease Feels More Personal Than Ever to Me
Yaffa Grace, MPH
Life Science Partner | Talent Acquisition Leader | Rare Disease/Biotech Talent Strategy + Job Search Expert | Community Builder Commercial Teams, Market Access, Patient Services, Medical Affairs, Marketing
Rare Disease has taken on a new meaning for me. I've been an advocate for the underdog my entire life since before I was even born because I almost wasn't. It's no wonder Rocky 3 and Rudy are among my favorite movies and I could read The Incredible Journey and Mila 18 all day long. As a recruiter, one of my specialties is Rare Disease.
However, this past year it got even more personal and I have only recently decided to open up about it publicly.
Last year my mom was diagnosed with Morgellon's disease-just writing that brings me to tears because there is so much suffering that comes with this disease, and I've seen it in real time. There are fewer than 20,000 US cases per year. Very little is understood about the origins of this disease and even less about how to treat it and the patient. In fact, there is no treatment, no standard of care, no cure--so the suffering continues and intensifies--at least for my mom.
There is so little understood about Morgellons that in some of the literature they say patients should be considered for psychiatric evaluation-implying that they are crazy. My mom has a Ph.D. and is one of the absolute smartest people I know, but her health, immune system, and spirit have been in serious decline for the past 2 years since she contracted Morgellons and that is devastating to all of us.
I am beyond passionate about Rare Disease; about building companies that work so hard to find cures for those patients who have few or little treatment options if any at all. Those patients and families are the ultimate underdogs and warriors.
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Yaffa Grace is the founder of Yaffa Grace & Co, a biotech and Pharma recruitment firm that works with companies and candidates. Click here to learn more about how we work with employers; find our LinkedIn and resume profile writing services for biotech and pharma executives and job seekers, and view the latest hot jobs.
Associate Director, Rare Disease Account Specialist U.S. Marine Veteran
5 年Thank you for sharing this. I am in the fight with you to bring awareness to rare disease. It hits home to me within my own family and friends.
Educator Marquette University
5 年Sorry about misspelling perspective, sincerity is an attribute that I'm attracted to. My aunt was a Dominican sister, who spent most of her life, over 70 years as a nun, in Tacoma, as an educator. I cared for my dad, a privilege, primarily by finding time to spend with him. My sister and her husband had him near their home and when I had time would visit and we would take a bus or drive to Atlantic City or play a round of golf. I felt the same about my mother, as is said, you only have 1. My college roommate and close friend just returned after visiting his daughter in Seattle. I am certain that your caregiving is monumental and challenging, especially with your career, just want to wish you a Happy Easter.
Educator Marquette University
6 年A captivating petspective.
Field Reimbursement Manager, Rare Blood Disorders
6 年Sending prayers for you mother ????and thank you for sharing your story. My son has a rare genetic condition that has lead to years of treatments and research. The work these companies do are critical to so many patients. I am praying there is a cure for AVMs in the near future .