ERDC 2025 Public Policy Initiatives

ERDC 2025 Public Policy Initiatives

ERDC focuses it’s top policy priorities on systemic issues that impact access to care and treatments for people with rare disease. Specifically we work to: LEARN MORE:
Intimacy In The Context of Chronic Illness

Intimacy In The Context of Chronic Illness

This topic is literally the last thing on anyone’s mind who has a chronic illness and/or rare disease. ERDC’s most recent survey results prove this. Out of 8 items that
Shenanigans in Healthcare

Shenanigans in Healthcare

Here is my edgy view… The healthcare industry is what it is in the United States. How’s that for profundity? We’re not going to change the fact that everyone wants
Medicare $2000 Out Of Pocket Med Cap

Medicare $2000 Out Of Pocket Med Cap

Next year Medicare will have an out of pocket cap on insurance for the first time – ever! The $2,000 cap is for medication only. All medication. All pharmacies! There
Letter to Senate Finance Committee -Orphan Cures Act

Letter to Senate Finance Committee -Orphan Cures Act

ERDC submits a letter for the record to the US Senate Finance Committee about the importance of correcting the Orphan Cures Act to ensure rare disease research continues.  September 16,
Labs & Radiology Tests

Labs & Radiology Tests

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