Danielle Drachmann is a Rare Disease Mother which led her to become Executive Director of Ketotic Hypoglycemia International & Patient Representative at the European Medicines Agency.

Danielle is a recipient of the Young Patient Advocate Award 2022 at the Black Pearl Awards hosted by EURORDIS.
Patient & Relative research-assistant at the Center for Research with Patients and Relatives (Center for Forskning Sammen med Patienter og Pårørende (ForSa-P) at Odense University Hospital, Denmark.

Danielle’s work started with the establishment of an international patient association where patients and relatives in close collaboration with leading medical experts have written scientific papers using a Citizen Science approach. The recent papers can be found here:
https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01797-2 2.
https://onlinelibrary.wiley.com/doi/full/10.1002/jmd2.12241

Danielle has been a part of the European Health Parliament (EHP 6) in the Committee for Telemedicine and Patient-Centred Care, and joined the European Medicines Agency as a Patient Representative for patients with rare hypoglycemia diseases, while also entering the Research Committee at H.C Andersens Children’s Hospital, Odense University Hospital, Denmark. Furthermore, Danielle has been working for EURORDIS (European Organization for Rare Diseases) to develop recommendations for Europes’ rare disease policy in the Rare2030 project.