OHF

Oxalosis & Hyperoxaluria Foundation

Emotional Wellbeing

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Living with a chronic condition places a daily emotional strain on both patients and caregivers, not to mention the newly added stress of a pandemic. Join us as we step throughs ways to recognize the signs and symptoms and learn ways to find balance in managing emotional health and wellness.

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Speakers:

Kristi Ouimet
OHF Patient Advisory Board Member

Maya Doyle, MSW, PhD, LCSW-R
Associate Professor
School of Health Sciences/Department of Social Work
Quinnipiac University, Hamden CT

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This February 28 is Rare Disease Day. With so many things going on in the world around us, it’s very easy to put off important things like health…

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Hear stories from others in the rare disease space who despite their diagnosis recognized that they could make a difference. No one is more motivated than you to drive progress against your disease. Learn how to make a change and breakdown barriers. You can take the next step!

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Speakers:

Anthony DeVergillo
Inclusive Digital Communicator
Our Odyssey Board Member

Rob Long
Uplifting Athletes
Executive Director

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Kidney stones are common — if you haven’t had a kidney stone, you likely know someone who has. Hyperoxaluria, kidney stones in children and multiple kidneys stones as an adult are not. Learn from two OHF key opinion leaders about causes, symptoms, diagnosis and when to take a more in depth look.

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Speakers:

Lama Nazzal, M.D.
Assistant Professor
NYU Langone Health, New York

Kyle Wood, M.D.
Assistant Professor
Department of Urology, University of Alabama, Birmingham

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Apply through the Young Adult Representatives of RDLA (YARR) Leadership Academy

The EveryLife Foundation for Rare Diseases is excited to offer the return of the YARR Leadership Academy, a series of on-line courses offered to a select group of young adults in the rare disease community (ages 18-30). Academy students will learn about the roles and opportunities for patient representation in policy-making, drug development, and the regulatory process and the steps it takes to get there.

YARR Leadership Academy provides a clear pathway for the next generation of young adults who are ready to be leaders in the rare disease community. Patient perspective is vital in closing the innovation gap and ensuring patients have access to safe and effective treatments. Representation matters. To learn more about the YARR Leadership Academy and review the full class schedule, please click here.
Applications close August 5th, 2022. 
Classes begin September 28th – November 16th, 2022.

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Register through the Young Adult Summer Series: LinkedIn registration page.

The final 2022 YARR Summer Series webinar will discuss how to navigate LinkedIn and career development as someone with a rare disease. Speakers TBA.