Got a message from the APF today (below). They are on the march working to educate the FDA and legislators of the importance of treatment for EPP.
"Epp clinical trial for participants. EPP Patients we need your letters as soon as possible. Please call the APF office for simple instructions 1-866-APF-3635. When the APF staff approaches legislators and the FDA they would have more impact if they had more validation from patients. The staff needs your letter to reflect your need for treatment as well as your personal experiences living a photo sensitive and possibly a photo toxic life. Please address your letters "To Whom It May Concern" or Desiree Lyon who will be taking the letters to Washington."
working to educate the fda and legislators
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