Enable, Engage, Encourage, Educate, Equip, & Empower Those Who Care About The Rare Disease Community
[popup_anything id=”468″] We will be posting all this week’s asks in the coming days – so you can share them with, and engage, your community. We need more than 1 day of rare disease policy – you can make that […]
[popup_anything id=”80″] Join us in calling on HHS Secretary Alex Azar to act immediately to restart the activities of the ACHDNC so it can continue its critically important work to improve newborn screening and save babies’ lives. Every year, more […]
What does the current rare disease landscape look like for adults in the US?What are the challenges of living with a rare condition? In a joint collaboration between the Rare Advocacy Movement (RAM) and THE PLANNING SHOP (TPS), an online survey has […]
