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Care for the Caregivers of Rare Diseases with Cristol O’Loughlin
Manage episode 380161995 series 3317851
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In the world of health problems, a topic often overshadowed is Rare Diseases. These conditions are classified as rare if they affect fewer than 200,000 people at any given time in the United States. Astonishingly, there are over 6,800 distinct rare diseases in existence. A heartbreaking statistic reveals that approximately two-thirds of Americans suffering from rare diseases are children. The truth is rare diseases touch all of us in some way, as we are all connected to someone affected by one.
Rare diseases constitute a significant and often overlooked public health concern. Shockingly, nearly 95% of these 7,000 known rare diseases lack any form of treatment or cure. It’s a stark reality that about 30,000 million people in the United States- half of them children- live with a rare disease. Additionally, these diseases are often chronic, worsening over time and posing life-threatening challenges. Furthermore, arriving at a correct diagnosis can be an agonizingly long and frustrating journey, sometimes taking years of testing and enduring misdiagnoses.
The discussion will take an emotional turn today, as we talk with our special guest, Cristol Barrett O’Loughlin. Her personal journey has been marked by the devastating loss of her three older brothers to a rare disease.
As a founder & CEO of Angel Aid Cares, Cristol is fiercely passionate about providing social, emotional, physical, and financial relief to caregivers, particularly mothers of children with rare diseases. A former UCLA instructor, she co-founded the advertising firm The Craftsman Agency and is humbled to advise global brands like NBA, Disney, Fox, Cisco Systems, and Google. During her tenure at IBM Life Sciences, she helped accelerate advancements in biotechnology. She has been a powerful speaker at TEDX , where she talks about the importance of Caring for Caregivers, which I highly recommend for everyone to watch.
Connect with Cristol:
@angelaidcares
@cristololoughlin
https://www.angelaidcares.org
https://www.angelaidcares.org/tedx
Pearl Mashour is a Master Women Empowerment Coach, Life Coach & Multiple Subject Credentialed Teacher.
Learn more about Pearl Mashour at www.femalefluence.com
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