When Amy Anderson, a Fairview pharmacist, learned her friend Scott DeGroot needed a kidney transplant, she didn’t hesitate to register to be a donor. Turns out, Anderson was the match DeGroot needed. “People would ask if I was nervous, and I wasn’t,” said Anderson. “I had peace, knowing this was what I was supposed to be doing.” Scott DeGroot, an avid runner and father of two, was diagnosed with polycystic kidney disease (PKD), a genetic condition often leads to a kidney transplant. To have it come from a friend and fellow running group member made it even more special. Scott went from total kidney failure to completing a Ragnar race in April and Grandma’s Marathon in June thanks to Anderson’s generosity. Read their story. ➡ https://bit.ly/3zN16JW
Fairview Health Services’ Post
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Our staff has an important message for you: support our community for #GivingTuesday! GivingTuesday is November 28, and your gift will be matched dollar for dollar up to $25,000 thanks to our partners at Amgen. That means you can make DOUBLE the impact for this special community. What is scleroderma and why should you give? #Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as an autoimmune disease. The word “scleroderma” comes from the Greek word “sclero”, meaning hard, and the Latin word “derma,” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. Currently, there is no cure for scleroderma, but the Foundation is working hard to advance research for better treatments and a cure. Your gift on GivingTuesday will directly support more than 300,000 Americans living with this #raredisease by providing support and education and funding innovative scleroderma research. You can give on Nov. 28 or today at https://lnkd.in/g83Rz3Bq. One day. One purpose. One mission. #GivingTuesday2023
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"In August 2017, Caitlin Eppes and her husband, Trey, welcomed their second child, Avery. Shortly afterward, what initially seemed like harmless birthmarks on Avery’s skin became the first indicators of a complex medical journey. Following an initial diagnosis of a port wine stain, Avery's symptoms prompted genetic testing. What was ultimately revealed was an exceedingly rare variant that left her family in a realm of uncertainty, until a fortuitous meeting with a neurologist changed the course of their future. What the Eppes family never expected was a one-in-a-million breakthrough: finding another child with the same extremely rare variant—also, incredibly, named Avery. Their path, defined by persistence, resilience, and a small yet incredibly valuable team of specialists and other ultra-rare patients, gave rise to The Avery Project—a symbol of hope and a catalyst for pioneering research into rare diseases. Avery’s mother Caitlin Eppes spoke to Know Rare about the remarkable twists and turns of Avery’s diagnostic story, and the incredible odds that they managed to defy to lead them to a breakthrough in her case." 🔗 Read the full story "Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey" on The Know Rare Blog: https://lnkd.in/gsma6s3f - #TheAveryProject #raredisease #genetherapy #rarediseases #rarediseaseawareness #rarediseaseadvocacy #spoonies #spooniestrong #spooniesupport #zebra #zebrastrong #KnowRare
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US Government Relations - Western US Team Lead, Advocacy and Professional Relations at Pfizer
I am looking forward to #ASH23, where we will participate in the scientific discussion around #Hemophilia and #SickleCellDisease and our commitment to advancing research for people living with blood disorders. Learn more about Pfizer’s latest advancements in the treatment and care for people affected by rare diseases. #PFEColleague
ASH 2023: Advancing Potential Breakthroughs for Patients with Hematologic Disorders
conversationleaders.pfizer.com
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In this episode of our #AMAUpdate, learn what doctors need to know about syphilis transmission, how to treat syphilis, plus congenital syphilis. Watch now.
Syphilis symptoms and causes, Bicillin shortage, cancer cases rise, and why sitting is so bad for us
https://www.youtube.com/
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It's Crohn's and Colitis Awareness Week. Known collectively as inflammatory bowel disease (IBD), Crohn’s disease and ulcerative colitis are painful diseases that attack the digestive system, causing symptoms including abdominal pain, diarrhea, fever, and weight loss. Crohn’s disease may attack anywhere along the digestive tract, while ulcerative colitis only affects the large intestine (colon). In addition to the impact on the GI tract, in some patients, IBD may also affect the joints, skin, bones, kidneys, liver, and eyes. Crohn’s & Colitis Awareness Week was created in 2011 by U.S. Senate Resolution 199, “A resolution supporting the goals and ideals of Crohn’s & Colitis Awareness Week, December 1-7.” Crohn’s & Colitis Awareness Week is designed to bring together the IBD community around a shared goal—to raise awareness and educate the public about IBD as part of our mission to see a future free of Crohn’s and colitis. For more resources on Crohn's and Colitis, visit: https://lnkd.in/gcysgQj
Homepage | Crohn's & Colitis Foundation
crohnscolitisfoundation.org
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I am looking forward to #ASH23, where we will participate in the scientific discussion around #Hemophilia and #SickleCellDisease and our commitment to advancing research for people living with blood disorders. Learn more about Pfizer’s latest advancements in the treatment and care for people affected by rare diseases. #PFEColleague
ASH 2023: Advancing Potential Breakthroughs for Patients with Hematologic Disorders
conversationleaders.pfizer.com
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May is Cystic Fibrosis Month. “Every May, the cystic fibrosis community comes together for CF Awareness Month. The theme of this year’s CF Awareness Month is, “Resilient.” Learn more about CF and how you can help this resilient community! https://lnkd.in/eGuAGitM
May is Cystic Fibrosis Month!
cff.org
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As a mother of a daughter with cystic fibrosis, I am humbled by the recent strides made in the treatment of this debilitating disease. The potential of Trikafta to transform the lives of those living with CF is truly groundbreaking. For years, families like mine have navigated the challenges of this relentless disease. Now, there is renewed hope. Trikafta not only offers extended lifespan but also an improved quality of life. It allows individuals with CF to pursue their passions, dreams, and ambitions without the burden of debilitating symptoms holding them back. I am filled with gratitude for the researchers, clinicians, and advocates who have tirelessly worked towards this moment. Their dedication and perseverance have opened doors to a brighter future for countless families like mine. Let's spread awareness and celebrate these milestones , but also remember the ongoing need for continued research, access to treatment, and support for ALL of those affected by cystic fibrosis. Together, we can ensure that every individual living with CF has the opportunity to thrive. #CysticFibrosis #Trikafta #vertex #BreakthroughTreatment #Hope #CFCommunity #untilitsdone Check out this article to learn more about the breakthroughs in CF treatment: https://lnkd.in/gQi5mcWf
The Cystic-Fibrosis Breakthrough That Changed Everything
theatlantic.com
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As a dedicated nurse in a clinical trials unit, I am passionate about advancing medical research and improving patient outcomes.
🌍✨ Honoring World Sickle Cell Day: Advocating for Awareness and Support ✨🌍 On this significant day, June 19, 2024, we come together to shine a light on World Sickle Cell Day. This day serves as a global platform to raise awareness about sickle cell disease, a genetic condition that affects millions worldwide. Let us take a moment to recognize the challenges faced by individuals living with sickle cell disease – from the daily battles with pain and complications to the need for greater access to specialized care and support. It is crucial that we stand in solidarity with the sickle cell community, amplifying their voices and advocating for improved resources and healthcare services. As we commemorate World Sickle Cell Day, let us commit to fostering a culture of understanding, empathy, and action. By increasing awareness, supporting research initiatives, and advocating for equitable access to care, we can make a meaningful difference in the lives of those affected by this condition. Together, let us be a force for positive change, driving towards a future where every individual with sickle cell disease receives the care, support, and respect they deserve. Join us in raising awareness, spreading compassion, and standing united in the fight against sickle cell disease. #WorldSickleCellDay #SickleCellAwareness #HealthEquity #SupportSickleCellWarriors #GlobalHealth #RaiseAwareness Together, we can make a difference. 💙 Francis 🩸
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