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Evaluating the impact of peer support and connection on the quali | 19104
Journal of Genetic Syndromes & Gene Therapy

Journal of Genetic Syndromes & Gene Therapy
Open Access

ISSN: ISSN: 2157-7412

+44 1223 790975

Evaluating the impact of peer support and connection on the quality of life of patients with familial chylomicronemia syndrome (FCS)


4th World Congress on Rare Diseases and Orphan Drugs

June 11-12, 2018 | Dublin, Ireland

Gilstrap A, Salvatore V, Williams K, Hsieh A, Gwosdow AR, Stevenson M, Davidson D

AkceaTM Therapeutics, USA
Gwosdow Associates Science Consultants, LLC, USA
NorthShore University Health System, USA

Scientific Tracks Abstracts: J Genet Syndr Gene Ther

Abstract :

Synopsis: FCS is a rare genetic disease characterized by extreme hypertriglyceridemia due to high chylomicron accumulation in the plasma. Burden of illness previously reported in the InFOCUS study, showed patients with FCS report psychosocial symptoms including anxiety, fear/worry, cognitive impairment, and physical symptoms including fatigue, abdominal pain, acute and recurrent pancreatitis. Community support and mentorship, either in-person interactions or online patient/caregiver forums, play an important role in helping patients manage their rare disease needs and associated psychosocial challenges. There is little current research assessing the impact of being connected to FCS-specific networks on the quality of life (QoL) in patients with FCS. Objective: Assess the possible impact of connections and patient/caregiver engagement with patient advocacy groups and social media platforms on QoL of patients with FCS. Methods: A web-based survey was designed to assess the level of social connectedness for patients/caregivers. Participants identified as having FCS or caregivers for FCS patients, were classified as being â�?�?activelyâ�?�? (participating â�?¥once every 2wks) or â�?�?passivelyâ�?�? (participating

Biography :

Dr.Alan Gilstrap has experience in the pharmaceutical industry with previous leadership roles at Akcea Therapeutics. He was intricately involved in the design and refinement of the study survey as well as being largely responsible for study approval and access in the United States and Canada.
Email:bhubbard@akceatx.com

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