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.
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.
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.