AMCP Partnership Forum: Preparing for and managing rare diseases

AMCP Partnership Forum: Preparing for and managing rare diseases

Despite the opportunity for large health gains, there are many challenges associated with rare disease therapies. Among these are striking the appropriate balance between the urgency to respond to patient needs with the uncertainty that is often inherent in rare disease therapy datasets leading to c...

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Bibliographic Details
Main Authors: Banks, A. (Author), Berry, D. (Author), Bioc, J. (Author), Cashman, L. (Author), Chambers, J. (Author), Ciarametaro, M. (Author), Day, J. (Author), Ferrell, S. (Author), Gbolahan, J. (Author), Giambalvo, D. (Author), Goldfarb, N. (Author), Gregor, K. (Author), Guinther, C. (Author), Harman, M. (Author), Hoffman, D. (Author), Hubbard, T. (Author), Jeffrey, P. (Author), Jolly, J. (Author), Kennedy, A. (Author), Khachatourian, K.W (Author), Kobernick, M. (Author), Koch, T. (Author), Koenig, T. (Author), Ladikos, N. (Author), Leonard, M. (Author), Liu, Y. (Author), Lopata, E. (Author), Newman, J. (Author), Niles, A. (Author), Odem, H. (Author), Oehrlein, E.M (Author), Patel, J. (Author), Raetz, K. (Author), Richmond, W. (Author), Trusheim, M. (Author)
Format: Article
Language:English
Published: Academy of Managed Care Pharmacy (AMCP) 2021
Subjects:
Article
caregiver
clinical pharmacist
consensus development
economics
Food and Drug Administration
genetic screening
government regulation
health care access
health care industry
health care policy
health care system
health insurance
human
Humans
long term care
Managed Care Programs
medical information
organization and management
patient advocacy
Pharmaceutical Services
pharmacy (shop)
practice guideline
public-private partnership
Public-Private Sector Partnerships
rare disease
Rare Diseases
stakeholder engagement
Stakeholder Participation
standardization
therapy
treatment outcome
uncertainty
United States
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