Rare Disease Day Information Pack

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

JOIN THE INTERNATIONAL CAMPAIGN TO RAISE AWARENESS FOR RARE DISEASES.

• 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

• Visit the RDD website, on Facebook and Twitter.
• Watch the RDD video in your language ; read our posts tagged rare disease.

How much do you know about DES?

• DES studies on cancers and screening.
• DES studies on epigenetics and transgenerational effects.
• DES studies on fertility and pregnancy.
• DES studies on gender identity and psychological health.
• DES studies on in-utero exposure to DES and side-effects.
• DES studies on the genital tract.
• Papers on DES lawsuits.
• DES videos and posts tagged DES, the DES-exposed and DES victims.