RareEDU Webinar Archive

RareEDU webinars are live, interactive presentations that cover topics important to patients and caregivers. Like the videos, these webinars are free and intended for everyone to access. Below is a list of our webinars with links to the recording and complete slide deck.

May 2022

• Walk In Our Shoes: The Experience of Rare Disease Patients – Webinar Recording

February 2022

• Advancing Equity in Rare Healthcare – Webinar Recording

December 2021

• Health Equity and Rare Disorders – Webinar Recording

November 2021

• Patient Focused Drug Development – How RDCA-DAP Can Help – Webinar Recording

October 2021

• Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research – Webinar Recording

August 2021

• Genetic Counseling for Rare and Undiagnosed Conditions – Webinar Recording

June 2021

• COVID-19: Continuing the Conversation – Webinar Recording
• Oral Health and Rare Disorders – Webinar Recording
• Oral Health and Rare Disorders – Slides

April 2021

• Transitioning to Adult Care – Webinar Recording

March 2021

• The Rare Sibling Experience – Webinar Recording

February 2021

• Advancing Health Equity: A Community Conversation for Rare Disease Day – Webinar Recording

January 2021

• COVID-19 Vaccines Update: FDA and CDC Leaders Address the Rare Disease Community – Webinar

December 2020

• A Rare Holiday Season: Tips for Mental Wellness During the Holidays and the COVID-19 Pandemic – Recording
• A Rare Holiday Season: Tips for Mental Wellness During the Holidays and the COVID-19 Pandemic – Slides

September 2020

• Just for you: Genomic Testing and Personalized Care for Rare Cancers – Recording
• Just for you: Genomic Testing and Personalized Care for Rare Cancers – Slides

August 2020

• Screen Baby Screen: Perspectives on Newborn Screening – Slides
• Screen Baby Screen: Perspectives on Newborn Screening – Recording
• Impact of COVID-19 on Rare Disease Community – Slides
• Impact of the COVID-19 Pandemic on the Rare Disease Community – Recording

July 2020

• From Data to Cures: Speeding the Process of Rare Diseases – Slides
• From Data to Cures: Speeding the Process for Rare Diseases- Recording

May 2020

• COVID-19: Current Status of Testing, Treatments and Vaccines – Slides
• COVID-19: Current Status of Testing, Treatments and Vaccines – Recording
• Drug Supply COVID – Slides
• Drug Supply in the Time of COVID-19 – Recording

April 2020

• Called to Action: NORD’s Response to COVID-19 – Recording
• Called to Action: NORD’s Response to COVID-19 – Slides
• A Rare Response: Addressing the COVID 19 Pandemic – Recording
• A Rare Response: Addressing the COVID 19 Pandemic- Slides

February 2020

• Starting a Not-for-Profit – Recording
• Starting a Not-for-Profit – Slides

January 2020

• Your Voice Matters: How to Engage with the FDA – Recording
• Your Voice Matters: How to Engage with the FDA – Slides

December 2019

• Life After Gene Therapy – Recording
• Life After Gene Therapy – Slides

November 2019

• Understanding the Gene Therapy Process and Aftercare – Recording

October 2019

• The FDA’s Role in Gene Therapy – Recording
• Rare Cancers: Facts, Challenges and Patient Stories – Recording

September 2019

• The Science Behind Gene Therapy – Recording

August 2019

• Gene Therapy: Yesterday, Today and Tomorrow – Recording

July 2019

• Self-Advocacy and Care Coordination – Recording

June 2019

• How Specialty Pharmacies Support the Rare Community – Recording
• Generic Drugs and Biosimilars 101 – Recording

February 2019

• Rare Disease Day: Ways to Get Involved and Raise Awareness – Recording

December 2018

• How to Make Your Health Insurance Work for You – Recording

October 2018

• Open Enrollment for Health Insurance: What You Need to Know – Recording

August 2018

• Genetic Testing 101 for Rare Diseases – Recording

July 2018

• Emergency Medical Protocols 101: Stores & Tools for Effective Advocacy – Recording

June 2018

• What Everyone Affected by a Rare Disease Should Know About the Orphan Drug Act – Recording

February 2018

• State vs Federal Policy Educational Webinar – Recording

April 2017

• Patient Registries: What They Are and How to Start One – Recording