Home
About
Published
News
Contact

Shapiro Neuropsychology Consulting

Home
About
Published
News
Contact
Jennifer Greenberg
May 31, 2015

Advocacy Groups

Jennifer Greenberg
May 31, 2015

NORD: National Organization for Rare Disorders
The next Rare Disease Day is February 29, 2016. Information available at NORD regarding other rare disease patient advocacy groups.
Visit the NORD Website
NORD Membership List

Newer PostInvolvement
  • 2023
    • Dec 22, 2023 Published: Ability change across multiple domains in mucopolysaccharidosis (Sanfilippo syndrome) type IIIA Dec 22, 2023
  • 2022
    • Jan 24, 2022 WORLDSymposium 2022 Growth Score Values- Poster Jan 24, 2022
  • 2021
    • Apr 5, 2021 Major MPS Natural History Study Review Paper Published Apr 5, 2021
    • Jan 6, 2021 Industry Collaboration Webinar Recording Available Jan 6, 2021
  • 2020
    • Oct 16, 2020 MPS Cognitive Master Class Oct 16, 2020
    • Jun 25, 2020 2020 Update to the MPS Consensus Conference for Cognitive Endpoints Jun 25, 2020
  • 2018
    • Mar 2, 2018 Satellite Session at the WorldSymposium, 2018 Mar 2, 2018
  • 2017
    • May 15, 2017 Consensus Papers Posted May 15, 2017
    • Apr 27, 2017 Thank you and Best Wishes to Kate Delaney Apr 27, 2017
    • Feb 16, 2017 Accelerating the Conversation: Rare Disease, The Patient Experience and What's Next Feb 16, 2017
    • Feb 10, 2017 EMA Slide Share- Presentation Given at Consensus Conference Feb 10, 2017
    • Feb 9, 2017 Video Share- Presentation from MPS Consensus Conference Workshop Feb 9, 2017
    • Jan 5, 2017 Update- A Successful Consensus Conference. Jan 5, 2017
  • 2016
    • Nov 7, 2016 Elsa Shapiro Announced as Keynote Speaker at WORLDSymposium Nov 7, 2016
    • Sep 20, 2016 Shapiro & Delaney form partnership with National MPS Society (U.S.) and UK MPS Society to organize an international consensus conference. Sep 20, 2016
    • Mar 26, 2016 Cognitive Endpoints- An interview with Dr. Elsa Shapiro, Rare Disease Report Mar 26, 2016
    • Mar 12, 2016 A Prospective Natural History Study of Mucopolysaccharidosis Type IIIA Mar 12, 2016
  • 2015
    • Dec 8, 2015 World Symposium 2016 Dec 8, 2015
    • Jul 8, 2015 Involvement Jul 8, 2015
    • May 31, 2015 Advocacy Groups May 31, 2015
News RSS
Back to Top

Copyright © Shapiro Neuropsychology Consulting LLC. All rights reserved.