Putting you in the heart of the rare community – The Sturge-Weber Foundation
Estimated reading time: 4 minutes
Patient advocacy groups deliver their top three unmet needs and main asks of industry to best serve their rare community. This week’s insights come from Karen Ball, CEO and Julia Terrell, director of Community Relations, The Sturge-Weber Foundation
The Sturge-Weber Foundation’s (The SWF) global mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated port-wine birthmark conditions through tenacious collaboration with clinical partners and pioneers, education, advocacy, research and friendly support.
The Sturge-Weber Foundation represents individuals affected by Sturge-Weber syndrome, a rare neurological condition present at birth that can impact the brain, skin and eyes. It is often associated with a facial port-wine birthmark and may lead to seizures, glaucoma, developmental delays and other complications. Due to its rarity, families frequently encounter challenges in diagnosis, treatment and access to specialised care. The Foundation works to improve awareness, support research and connect patients, families and medical professionals. Through advocacy and education, it strives to enhance quality of life and ensure better outcomes for those affected.
What are your top three unmet needs or main asks of industry to best serve your rare ecosystem?
For families affected by Sturge-Weber syndrome, early diagnosis can make a life-changing difference. Yet many parents face uncertainty and delays before getting clear answers. We are asking for support to expand awareness and education so that more children are identified sooner and connected to the right care. By increasing understanding among healthcare professionals and the public, we can help reduce time to diagnosis, improve monitoring for complications like seizures and glaucoma, and give families the knowledge they need from the very beginning. Together, we can ensure no family feels alone or overlooked in those critical early stages.
Families living with Sturge-Weber syndrome need more than symptom management—they need progress and hope for the future. Increased funding allows us to support vital research into better treatments, improved care strategies and ultimately a cure. Every investment helps scientists and clinicians deepen their understanding of the condition and move closer to breakthroughs that can change lives. Donations also help build patient registries and collaborative networks that are essential for rare disease research. With sustained support, we can accelerate discoveries and give families real reasons to hope for better outcomes.
Living with Sturge-Weber syndrome can feel isolating, especially when access to specialist care and trusted information is limited. We are asking for support to expand programmes that connect families with expert care, reliable resources and each other. This includes improving access to multidisciplinary specialists, virtual support services and community networks through the Sturge-Weber Foundation. When families are supported, they are better equipped to manage complex health needs and navigate daily challenges. Your support helps ensure that no one faces this journey alone and that every individual has the opportunity to live their fullest life.
Connect with Karen
Connect with Julia
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