CDHi President, Dawn Torrence Ireland, attended the 2018 World Orphan Drug Congress last week in Washington DC, meeting with other world leaders in Rare Advocacy, pharmaceutical and bio tech companies and researchers to build collaborations toward a better future for all rare diseases and birth defects. Even though CDH is common (but classified as rare for government programs and funding) and is not a disease that can be cured with a medication, our patients still need better pulmonary and other medications.
Once again, it was stressed how important patient registries are for research. Have you filled out the research survey yet? http://www.cdhresearch.org