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Webinar Series

NORD ‘s free webinar series address issues of importance to the rare disease community.  Frequent topics include issues related to legislation, partnering with government agencies, capacity building, access issues, drug development, and more.  Our speakers and presenters are thought leaders and represent key stakeholder groups, including government, industry, medical professionals, and patient advocacy.  We encourage interaction between presenters and participants.


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Upcoming Webinars & Conference Calls


CME: How the Rare Disease Community Can Benefit 

July 2017


August 2017


Diversifying Your Donor Pool & Fundraising Techniques

Date Pending

Best Practices When Working with Industry

November 2017

Social Media

January 2018

Conference Calls

These calls will be used to update our membership community on current NORD initiatives and important rare disease related activities. Various departments at NORD will brief the community on current NORD initiatives. Anyone from your organization is welcome to join the call. We send out recaps after the calls with all the information if you are unable to attend. Each call will be approximately 60 minutes in length and each attendee is required to pre-register. You will receive an email with the formal invitation at a later date.

Wednesday, June 7, 1:00 p.m. EST

Wednesday, August 2, 1:00 p.m. EST

Wednesday, December 6, 1:00 p.m. EST

*Dates are subject to change*


Value of Membership

These opportunities are available as a benefit to NORD member organizations
Take advantage of these opportunities by applying for membership today!

Previous Webinars

Natural History Studies (NHS) & Patient Registries
(May 10, 2017)
Unlike more prevalent diseases, rare disease drug development poses more challenges due to the lack of information about rare diseases and candidates for clinical trials. A presentation was given on Natural History Studies and how they can help rare disease drug discoveries by guest speakers Suzanne Rossov and Allison Seebald, NORD Research Programs Associates.  They also discussed the importance of Patient Registries, as well as NORD’s Patient Registry Platform.

ICD-10 Applications & Codes
(April 27, 2017)
Special guest speaker and expert Jayson Slotnik, Partner, Health Policy Strategies, Inc. provided an overview of ICD-10 codes, why they are important for your rare disease, and how to successfully apply for an ICD-10 code for your disease state.
View the recording here.

An Overview on the Undiagnosed Diseases Network (UDN)
(June 3, 2016)
View the recording here.

NORD-FDA Natural History Study Project: Overview and Application Criteria
(January 7, 2016)