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.
Have a suggestion for a webinar? Let us know:
Contact the team at firstname.lastname@example.org
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, October 4, 1:00 p.m. EST
Wednesday, December 6, 1:00 p.m. EST
*Dates are subject to change*
NORD Promotion of Your Events and Disease Awareness
Learn from a panel of NORD expert staff on the myriad of ways we can publicize your organization’s information including upcoming events, new resources on the disease-state you serve, job postings, and more! What’s more: increasing awareness of rare diseases is a priority for both NORD and its members, and one of the resources NORD has developed over the years for that purpose is our Rare Disease Database, which provides reports on over 1,200 diseases. This database is often quoted in national, state and local media stories. It’s also made available to students and others through subscribing medical schools, universities and public libraries. About 90% of the nearly one million visits made to NORD’s website each month go first to rare disease reports. As a NORD member and leading organization, you play an important role in helping maintain the Rare Disease Database. Working together, we can continue to raise awareness of rare diseases through this critical educational resource.
NIH NCATS and You
CME: How the Rare Disease Community Can Benefit
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)
NORD-FDA Natural History Study Project: Overview and Application Criteria
(January 7, 2016)