CDH International participated in the Bio Data World Congress 2020 last week. Our President, Dawn Ireland, spoke on how our grassroots patient organization started our own natural history research database and she also participated in a panel in this virtual conference.
We are honored to participate in research data conferences and to speak about and inspire collaborations between patient groups and industry to further research for rare diseases.
Dawn gave a speech on “Patient and their data– Understanding the patient perspective and patient organised registries” and was on a panel for “Sharing genomic data across borders- challenges faced”.
