@GlobalGenes RARE Advocacy Summit is taking place September 19-21 in San Diego and will bring together one of the largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies. Get ready to connect, learn, and inspire! Learn more here: https://go.globalgenes.org/share-ras #GGSummit #CareAboutRARE #RAREDiesase #GlobalGenes #SanDiego #RAREAdvocacySummit #GGSummit23
TAAFWalk Over the Edge is a 2-day celebration comprised of our 18th Annual Aneurysm and AVM Awareness Walk, TAAFWalk, on 9/24 and our first-ever, Over the Edge urban rappelling event on 9/23. More Info: AVM Alliance & TAAFWALK 2023
Join the Joe Niekro Foundation’s virtual 5K! Walk, Run, Cycle or Roll to help us raise AVM and aneurysm awareness, fund medical research and connect patients and caregivers with the community and resources they need to thrive! We’re raising money for Team AVM Alliance for the 5K and would love your support! More Info: Aneurysm […]
Brain AVM Awareness Month is dedicated to increasing knowledge and understanding of arteriovenous malformations (AVMs) in the brain, a rare but critical condition. A brain AVM is an abnormal tangle of blood vessels connecting arteries and veins, which disrupts normal blood flow and oxygen circulation. When left undiagnosed or untreated, AVMs can rupture, leading to […]
AVM Alliance, a 501(c)(3) non-profit, will be holding our annual fundraiser event during the entire month of October which is also AVM Awareness month. We rely solely on generosity during this once-a-year event to provide the funding needed for our programs and events. More information on how you can support AVM Alliance and our pediatric […]
National Epilepsy Awareness Month is observed each November to spotlight the challenges and triumphs of the epilepsy community. Epilepsy, a neurological disorder marked by recurrent, unprovoked seizures, affects millions worldwide, making it vital to raise awareness and dispel misconceptions about the condition. This dedicated month emphasizes the importance of understanding the diverse experiences of those […]
Rare Disease Day is a global observance dedicated to raising awareness about rare diseases and their impact on patients' lives. Celebrated on the last day of February each year, this event brings together patients, families, caregivers, medical professionals, researchers, and policymakers to highlight the challenges faced by those living with rare diseases. Due to their […]
A support group for parents who are either coping with a child's AVM diagnosis or the loss of a child due to an AVM rupture. Held the third Wednesday of every month via Zoom at 1pm CST / 8pm EST Be a part of our tribe! Register here: https://rb.gy/14d30
Get ready for an out-of-this-world experience with our 'Eclipse Escapade'! Thanks to the generous donation from Greene Eyes Optometrists, we've got Solar Eclipse viewing Kits for our Pediatric Stroke Community. Each kit includes two pairs of eclipse viewing glasses! Do you want to participate? Here's how you can join the cosmic fun: 1) Sign up […]
Pediatric Stroke Awareness Month is an essential initiative spotlighting a medical concern that many are unaware of: children, even infants, can and do experience strokes. While strokes are often associated with older adults, they can strike at any age, including in utero. The symptoms and outcomes can differ from those in adults, making early recognition […]
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