Vasculitis Foundation

The season of giving is a time of reflection and gratitude. Sometimes the realities of living with vasculitis make gratitude challenging but we see time and time again the strength and resilience of the vasculitis community. It's Thansgiving week in the U.S. Show your solidarity with a donation today! https://lnkd.in/ec--v3QJ

Thanksgiving is a time of reflection and gratitude. Sometimes the realities of living with vasculitis make gratitude challenging but we see time and time again the strength and resilience of the vasculitis community. It's Thansgiving week in the U.S. Show your solidarity with a donation today! https://lnkd.in/ehr7z5Am

We enjoyed catching up with Naomi Amudala to talk about Advanced Practice Providers (APPs) and their vital role in your rare disease journey! ?? APPs are key members of your care team, dedicated to providing the highest quality care and support every step of the way.

"That's my rheumatologist. Takayasu's arteritis had no chance against us. I've never seen a doctor so aggressive against a disease yet so kind and compassionate towards her patients. First time I walked myself to her office after years of not being able to, she gave me the biggest hug." (Note: Dr. Pioro was at the University of Washington. She just retired.) https://lnkd.in/eV7aErjF

Congratulations to Dr. Carol Langford for her recent confirmation as president of the American College of Rheumatology Board of Directors. Dr. Langford has supported the Vasculitis Foundation for more than 25 years as a VF Medical Consultant and volunteer. She has helped the VF develop patient educational materials, our research and fellowship programs and presented at our symposia and conferences. Dr. Langford joined the Cleveland Clinic as its Director of the Center for Vasculitis Care and Research within the Department of Rheumatic and Immunologic Diseases in 2004. She is professor of Medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University School of Medicine. She continues to be a steadfast advocate for patients with vasculitis. Her focus is on patient care, education and research in vasculitis. She has served as the principal investigator for randomized trials in granulomatosis with polyangitis (GPA), giant cell arteritis (GCA) and Takayasu arteritis. Thank you for all you do Dr. Langford!

We had another insightful conversation with our dear friend, Dr. Rula Hajj-Ali! She shared her perspective on the Avacopan study, exploring its impact on various body systems beyond ENT involvement and its role in achieving a successful steroid taper. The results remain incredibly promising, offering hope for improved treatment strategies!

"We need your input! If you have Behcet's disease, please take a moment to fill out the Behcet's Disease Patient Questionnaire on survey Monkey. Your responses will help guide future initiatives to better support our community. Thank you! https://lnkd.in/gzuPjysF

??? Let’s catch up with one of our fellow nonprofits at the ACR Convergence—our friend and colleague, Natasha Trehan from Take a Pain Check Foundation! They offer incredible resources like social media content, blogs, support programs, a podcast, and so much more. We’re diving into an important conversation about transitional care, focusing on young adults, advocating for yourself during this critical phase, and improving the quality of care. ?? Thank you for your dedication to empowering the next generation!

Eliza’s vasculitis journey began in October 2019 when she was 15 and began suffering mild ear pain. Her doctor diagnosed her with an ear infection and prescribed antibiotics. “I was back and forth from the doctors every week for about 2 months whilst being told it was an ear infection,” she said. She was given antibiotics and pain killers, but couldn’t get relief. She developed vertigo and lost sleep because of the pain and other symptoms. At the end of 2019 she lost her hearing. https://lnkd.in/egvCw7Yb

We had the pleasure of catching up with Dr. Robert Spiera, a valued friend of the VF! Dr. Spiera participated in a groundbreaking clinical study on Avacopan, focusing on its effects on ENT involvement in patients and comparing it to Prednisone use. The results are incredibly promising, showing encouraging progress toward achieving remission! ??