Be Here. You will learn from others that know.
Being diagnosed with a terminal rare disease is devastating. We understand what you are going through. Please use our knowledge and experience to help guide you and keep you strong for what is ahead. Find comfort in knowing you will face no part of this alone.
Be Hopeful. Your optimism inspires.
At one time diabetes was fatal. Now there is insulin. Are you old enough to remember polio? Now there is a vaccine.
Be a hero. These children need them.
You are the "... white knight upon the fiery steed." Save your NPC child from fear and pain by asking questions, pushing back and trusting you know what is best for them. Save your NPC patient by listening to one of the most organized parent communities in the history of Rare Disease. Save your NPC neighbor by being kind to his family and rallying funds to slay this dragon.