Eosinophilic Disorders Alliance

“Other exp $10508”

“As people with rare diseases - we need absolutely every resource we can get! It's tough out there!ERDC is all about improving access to quality care and treatments. We do this through our education, Rare Candor podcasts, and by developing and distributing our flagship tool - the Hospital Emergency Advocacy & Treatment Kit (HEAT Kit). The kit is availabe free to anyone impacted by one of the rare diseases we serve. Most of our work is focused on Vasculitis, Myasthenia Gravis, and IGG4, however, in 2024, we served 40 additional rare diseases by providing our disease-specific HEAT Kits to individuals impacted by rare disease. Our tools help patients and loved ones gain confidence and agency as they seek to access care.In addition to the livestream education, our Rare Candor Podcast and collaborative coalition work noted, we also provide individual support and resources as requested. These resources are to assist people navigating rare disease with resources and support. Many times that involved referring them to other organizations, connecting them with facilities, discussing insurance navigation, or simply being an ear. We do this through individual outreach as well as connection through provate patient Facebook groups. Because the individuals involved in ERDC ARE patient and care partners, we access most of our community through our patient channels.At ERDC we pride ourselves on NOT duplicating what other organizations are already doing. We take the time to see what other organizations are providing and step in to fill the gaps. We are so incredibly grateful for large entities who have so much to offer in disease state education: every single person who is educated and supported on this incredibly difficult journey is a bonus!Our focus - 100% of the time is improving qccess to quality care and treatments. Full stop.Because we're patients and care partners we know how vital it is to embrace all education and supportive resource that is out there. We also have a unique connection, understanding of pain points, and the reality of living with the disease we collectively serve.”