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
- 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.