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Time To Listen To Sickle Cell Disease

HEAR MY PAIN

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Organized by Pathways To Trust

$1,355

17 Supporters

Story

Time To Listen Sickle Cell Disease

Sickle Cell Disease patients face daunting challenges when they attempt to access care: bias, uninformed providers, past trauma. With your donation or auction bid, you can help these patients receive life-saving care in an atmosphere of respect, compassion and encouragement.

Sickle Cell Disease (SCD) occurs in approximately 100,000 Americans, the large majority of whom are people of color. Historically, this patient population has faced significant hurdles. Because it is a rare disease, many healthcare providers do not have a working knowledge of the pathophysiology, symptoms and treatment for SCD, and consequently, insufficiently treat vaso-occlusive crises (VOCs), leaving patients in agonizing pain and significant danger. Racial bias, deeply embedded in the healthcare system, has denied patients of color access to high quality medical care or even adequate pain relief. The assumption that people of color complaining of agonizing pain are merely drug seekers has plagued this community for generations, and is now intensified in the wake of the opioid crisis. This is the status quo Pathways To Trust is determined to change through our Time to Listen to Sickle Cell Disease initiative.

The proceeds raised will support Time to Listen to SCD educational programs to physicians, nurses, and other healthcare providers.  These interactive events deliver necessary clinical knowledge to treat this rare disease as well as insights on the emotional, social/behavioral and professional challenges that go along with it. These workshops help providers deliver sensitive, respectful and appropriate care to a population of rare disease patients who are very often marginalized. We have developed and delivered, both virtually and in person, several programs for the sickle cell disease community since our founding in 2020. This fundraiser will allow us to expand our programs on an international scale for healthcare professionals and patients who have requested our help around the globe.

The initiative also includes patient-facing programs that help the Sickle Cell Disease community learn to confidently participate with their medical care team in their treatment decisions so they can be full partners in their care, which leads to better health outcomes. These Patient Empowerment programs address challenges the community faces when seeking emergency care, visiting specialists' offices and transitioning from pediatric to adult care.

Time to Listen to SCD has been impacting care for this patient population since our founding in 2020 because our programs have changed the way hundreds of providers see SCD patients. In the words of our participants:  “I think the program is great. It really opened my eyes and I am very appreciative,” and "The team's approach to educating clinicians is innovative and provides a safe space for health professionals to be aware of their implicit bias and how to provide quality care.”

Your support can help SCD patients get the care they need.
Join us in this season of giving.



Donate

Share Fundraiser

$1,355

17 Supporters

Pathways To Trust