At KrabbeConnect, we work hard to help fill gaps in research. Below, we invite you to review the research projects presented at conferences and other projects resulting in a publication.
Publications
The National Organization on Rare Disorders, “Voice of the Patient Report: Krabbe disease.” 16 March 2021. This white paper covers the content voiced at the Externally Led-Patient Focused Drug Development meeting held on October 29th, 2020 with the Food and Drug Administration; a KrabbeConnect Initiative.
Poster Presentations
Anne Rugari, Eric Toppy, Carol Ogg, Dawn Laney, Stacy Pike-Langenfeld. KrabbeConnect Patient Journey and Resource Maps. Krabbe Translational Research Network meeting; 2021 March 17-18; Virtual.
Anne Rugari, Eric Toppy, Carol Ogg, Dawn Laney, Stacy Pike-Langenfeld. KrabbeConnect Patient Journey and Resource Maps. 18th Annual WORLDSymposium Conference; 2021 Feb 9-11; Virtual.
S Pike-Langenfeld, DA Laney, A Rugari, CZ Ogg. Disease Burden and Treatment Considerations in Krabbe Disease: The Caregiver Perspective. The National Organization on Rare Disorder. The Time Is Now-Rare Diseases & Orphan Products Breakthrough Summit; 2019 Oct 21-22; Washington, DC.
S Pike-Langenfeld, DA Laney, A Rugari, CZ Ogg. Disease Burden and Treatment Considerations in Krabbe Disease: The Caregiver Perspective. 17th Annual WORLDSymposium Conference; 2020 Feb 10-13; Orlando, FL.