ERDC Community Update A woman in our community once told us that TAVNEOS was the first thing in years that let her feel like herself again — off the high-dose steroids that had reshaped her body and her mood, and back to a version of her disease she could live with. Stories like hers are…
We have added a new page to the HEAT Kit. This page, put together in consultation with a rheumatologist who is a vasculitis expert, surfaces some blood tests and considerations when being evaluated in a health care setting. The blood tests are the best practice tests that are routinely completed on vasculitis patients to monitor…
There are so many bad actors in the health care ecosystem that it’s hard to keep track of them all! That’s why we’re here – to try and break down some of these complicated and bloated systems to ensure that you have the information you need – and when you have the energy and time…
Just wanted to inform everyone who has a rare disease, or loves someone with a rare disease, that there is an opportunity to make a difference. When it comes to research for medications for our rare diseases we can have a voice. Background – the Problem: Back in the 1980’s Congress passed the Orphan Drug…
There is a Save Rare Treatments task force that is working on saving the incentives for pharmaceutical companies who create the research and medications for our rare diseases. These incentives were accidentally overlooked in the recently passedInflation Reduction Act.Without getting too much in the weeds – we’re trying to get Congress to pass the Orphan…
Healthcare. There’s something in that word that brings up a visceral and usually unpleasant sensation in the pit of our stomachs. And. It’s obviously essential for the survival of people with rare and chronic diseases. Years ago my wife started an organization to help people with Parkinson’s Disease and their care systems. She was…
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