Ultra Rare
Ultra Rare Activism: The very idea that lingers, calling you for action, a demand for better treatment. What will you do in the face of injustice? Your feelings are valid and your truth is justified. Rare Disease is gaslighting. Manipulating of false information to sow doubt. This unfairness cannot be ignored. Toxic positivity tries to silence your emotions, urging you to be grateful and silent. Stand up, speak out, and advocate for change. This is the movement, this is the march.
Write FDA, Congress, and Senate
Write a thousand times, and do it again…..flood the offices with emails, calls, and letters of change.
Equitable treatment for Rare Disease.
