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. Click to Register Speakers: Kristi […]
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...
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! Click to Register Speakers: Anthony DeVergillo Inclusive […]
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. Click to Register […]
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 […]
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.
The final event of Hyperoxaluria Awareness Week 2022, and this year our theme is “ACCESS” Our goal is to highlight the importance of being able to ACCESS the most up-to date hyperoxaluria information and care while spreading awareness for hyperoxaluria and connecting the community.
Join the 14th International Hyperoxaluria Workshop, the largest hyperoxaluria professional and patient event worldwide. The workshop is an unrivaled opportunity to network and exchange invaluable knowledge with all stakeholders in the hyperoxaluria community— patients, caregivers, researchers, clinicians, and industry representatives. People living with a rare disease have the right to reach their highest potential of […]
Join patients, families, experts, researchers, and clinicians to connect, learn, and grow. Get ready for a day filled with inspiration, learning, and heartfelt connections. Renowned experts will share their wisdom, […]