International Rare Disease Nonprofit, Alagille Syndrome Alliance (ALGSA) To Host First Annual Gala and Silent Auction to Recognize Rare Disease Advocates
WILSONVILLE, OR, May 1, 2018 — With the help of San Diego, CA, based researcher, Dr. Duc Dong and Sanford Burnham Prebys Discovery Institute, a cure for the rare disease, Alagille Syndrome, is one step closer. The ALGSA will recognize Dr. Dong at their first annual Gala of Dreams Presented by Albireo to be held June 30, 2018 at the San Diego Marriott Del Mar from 7-10pm.
The Alagille Syndrome Alliance serves as the primary resource and advocate for the rare disease, Alagille Syndrome, an autosomal dominant genetic disorder associated with the liver, heart, eyes, skeletal abnormalities, facial features and more. ALGS Warriors may have any combination or severity of these symptoms, making ALGS one of the most difficult rare diseases to diagnose and treat. The ALGSA also funds researchers dedicated to better treatments and a cure of the disease.
The theme of this year’s Gala of Dreams is “The Dawn of a Dream” signifying the new advances in Alagille Syndrome research and celebrating the start of the organization’s 25th year in existence. The ALGS community will come together for the gala event and silent auction to honor the contributions of Dr. Dong and other ALGS champions and fund the continued mission of the ALGSA. The evening promises unique opportunities to interact with researchers, doctors, pharma representatives and ALGS families in a fun, casual setting. Event sponsorships and a VIP experience including a tour of Dr. Dong’s lab are available. Contact Cher Bork at cher@alagille.org for more information about the event and to request a sponsor kit.
General tickets are available at http://weblink.donorperfect.com/algsagalaofdreams.
To learn more about Alagille Syndrome and the Alagille Syndrome Alliance, visit
www.alagille.org.
One of the key challenges in rare disease care is the limited understanding of these conditions. Many rare diseases are genetic or congenital, and research into their causes and potential treatments is often underfunded. Patients and their families frequently face diagnostic odysseys, enduring years of uncertainty before receiving a proper diagnosis.
Come join other ALGS families at a fun and informative event. We have topics to fit every ALGS family from ALGS 101 to deep dives into the genetics of ALGS and current research on the disease.
