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2014 Rare Disease Day at Rutgers Event Speakers

Opening Remarks - Chancellor of Rutgers Biomedical and Health Sciences

Brian L. Strom is the inaugural chancellor of Rutgers Biomedical and Health Sciences as of November 1, 2013. Chancellor Strom leads the effort to strengthen medical and other health professions education and practice in New Jersey, provide increased academic opportunities for students, deliver excellent health care, and allow Rutgers to excel in medical, dental, nursing, pharmacy and basic health sciences research, education, and service. For more information on Chancellor Strom, please visit the Chancellor's web page by clicking here.

Julie Raskin

 

Since 2010, Julie has been serving as executive director of Congenital Hyperinsulinism International (CHI), an organization dedicated to improving the lives of patients with the rare condition, congenital hyperinsulinism (HI).  Prior to that, Julie was vice president of the Board of Directors of CHI from 2005-2010.  From 1999-2005 she served as part of a working group of parents of children with HI advocating for HI patients. 

 

Julie’s son Benjamin who is now seventeen was born with HI.  Julie became involved in rare disease patient community working through her personal experiences raising a child with a rare condition.  She currently lives with her family in Glen Ridge, NJ.  Julie has also been an active participant in general rare disease advocacy and have attended numerous rare disease conferences and symposia sponsored by NORD and other groups.  She was recently a merit reviewer for PCORI grants. About a year ago, Julie became co-chair of the working group NJ Rare.  The group organized around the event that was held last March at the NJ State House in honor of Rare Disease Day. 

 

http://www.my9nj.com/story/24529392/nj-rare-diseases

http://www.sireninteractive.com/sirensong/rare-disease-and-the-power-of-partnership/#more-11503

http://www.njspotlight.com/stories/13/12/11/nj-healthcare-coalition-draws-attention-to-plight-of-those-with-rare-diseases/

 

 

Jayne Gershkowitz

Jayne C. Gershkowitz, Vice President, Patient & Professional Advocacy and Public Policy,

Amicus Therapeutics

 

Jayne Gershkowitz, is a long-time patient advocacy professional with expertise in the rare disease community, who has been extending her perspective to the broader biotech arena. She is a member of the Steering Committee of the Healthcare Institute of New Jersey, the Government Relations Committee of BIO, a co-founder of the Patient Advocacy Committee of BioNJ, which she chairs, and serves as Vice President of Education of the Board of Directors of National Tay-Sachs & Allied Diseases Association, a member of the Patient Advocacy and Access and Reimbursement Committees of the Corporate Alliance of the Global Genes RARE Project and participates on the Policy Working Group of the NORD Corporate Council (National Organization for Rare Disorders). Ms. Gershkowitz often speaks on issues affecting the patient community and about the partnership between patients and industry in orphan drug development.

 

She co-founded, the LSD Research Consortium in partnership with NINDS, established the NTSAD Research Initiative and co-organized an NIH scientific workshop while executive director at National Tay-Sachs & Allied Diseases Association in the early 2000s.

 

A Boston native, Ms. Gershkowitz is a graduate of Syracuse University and studied business administration at the Radcliffe Graduate Seminars Program.

 

 

                      

 

 

 


 

 

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