A childhood photo of Callie Marshall, left, with sister Rocky Tucker. Marshall was born with Alström syndrome, a rare genetic disease that causes, among other things, vision and…
Read more A rare disease took her sister. Now, a Burleson mom is helping search for a cureStatins, one of the most extensively studied drugs on the planet, taken by tens of millions of Americans alone, have long had a perplexing side effect. Many patients—some…
Read more America’s Most Popular Drug Has a Puzzling Side Effect. We Finally Know Why.Jan. 25, 2023 – A recently discovered inflammatory disease known as VEXAS syndrome is more widespread and dangerous than previously understood, a new genetic analysis suggests. While it’s…
Read more Newly Discovered Genetic Disease Is More Common Than ExpectedBy Stefani Shea-Akers, as told to Keri Wiginton In 2013, when I was an English professor at a community college, teaching became difficult. I struggled to speak during…
Read more Balancing the Good With the BadPress Release – updated: Mar 3, 2021 SILVER SPRING, Md., March 3, 2021 (Newswire.com) – In partnership with more than 70 advocacy groups, healthcare providers, and biotech companies,…
Read more TS Alliance Advocates for Prioritization of Rare Disease Patients and Caregivers for COVID-19 VaccinesAn Event Celebrating the Next Generation of All-Star Researchers Who Are Working on Breakthrough Treatments and Cures for Rare Diseases Press Release – updated: Feb 27, 2020 PHILADELPHIA,…
Read more Uplifting Athletes Non-Profit to Host Third Annual Young Investigator Draft Presented by CSL Behring on Saturday, March 7, 2020 at Lincoln Financial Field in PhiladelphiaPatient Advocate and International Executive Director Lara Bloom to screen inspiring documentary, “Issues with my Tissues,” to empower patients, families, and raise awareness for EDS and associated disorders…
Read more Becoming ZebraStrong: Ehlers-Danlos Society Launches International Patient Empowerment and EDS Awareness Tour
