Rare Disease Day Information Pack

Join the international campaign and get involved in raising awareness !

The main objective of Rare Disease Day (RDD) is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.

OrphaNet, portal for rare diseases and orphan drugs, includes the Diethylstilbestrol DES syndrome as rare disease ORPHA:1916.

RDD Pack Overview

  • What is Rare Disease Day?
  • 10 Years of Rare Disease Day.
  • The Role of EURORDIS.
  • The Role of National Alliances.
  • How to Raise Awareness.
  • Rare Disease Day Guidelines.
  • Download Materials.
  • Register Your Event and Become a Friend.
  • Tell Your Story and Raise and Join Hands.
  • Download the Info Pack here and the full Web Pack (10 MB) here.

More information

How much do you know about DES?

Author: DES Daughter

Activist, blogger and social media addict committed to shedding light on a global health scandal and dedicated to raise DES awareness.

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