Other Names for this Disease
- Congenital pachyonychia
- Pachyonychia congenita syndrome
The Spectrum of Caregiving and Palliative Care in Rare Diseases, August 2014
Location: NIH Natcher Conference Center, Bethesda, MD
Description: The findings and recommendations resulting from the Workshop will provide guidance to the extramural community as well as to NINR and other Institutes, Offices (e.g., ORDR), and agencies in developing strategies for advancing the science of palliative care and caregiving in rare disease and research programs. It is anticipated that a funding opportunity announcement will result from the Workshop.
Pediatric Dermatology Research Alliance (PeDRA) Annual Conference, Friday, October 18, 2013 - Sunday, October 20, 2013
Location: Westin O’Hare Hotel , Rosemont, IL
Description: The goals of the PEDRA annual meetings are to provide an educational platform that will enhance the research skills of PeDRA investigators and establish a forum for the critical review of research proposals developed by PeDRA disease-focused groups and to create a bridge between basic scientists and clinicians to enhance opportunities for research. Each group will identify and prioritize the clinical needs and therapeutic opportunities.
2013 International Pachyonychia Congenita Consortium (IPCC) Symposium, Thursday, February 14, 2013 - Sunday, February 17, 2013
Location: Park City, UT
Description: By bringing experts from around the world together, the 2013 symposium will create a powerful environment to formulate a clear path forward for cooperative clinical studies based on completed research or new research designed with clinical endpoints in mind.
RDCRN 3rd Conference on Clinical Research for Rare Diseases, Tuesday, October 02, 2012
Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.