RARE Webinars™

Geared towards educating patient advocates, family members, and caregivers, our RARE Webinars have been impacting the rare disease community for years. Please join subject matter experts in discussions about pressing issues, ask questions, and learn about topics important to you.

 * If you cannot attend the webinar at its designated time, be sure to register and you will be notified when it becomes available online for viewing after the event.

 ** For technical help with our webinars, please click here. And please note: The password to join all of our webinars is “Rare” with a capital R.


2015 Webinars

Click topic title to download recorded webinar and materials

Date Topic
April 1, 2015 How to Discuss Genetic Disease with Your Loved Ones
Approximately 80 percent of rare diseases are caused by genetic changes; however, genetics is a topic that not all of us are familiar with. This webinar covers the basics of the underlying genetics of rare disease and provides viewers with the strategies and advice to discuss them with the ones they love.
June 1, 2015 Leveraging a Rare Disease Center of Excellence
As many patient advocates continue on their journey to become empowered activists, some may learn and want to consider starting a rare disease center of excellence. This webinar covers how this can be done, what the obstacles and challenges are, and whether there are other options viewers should consider.
August 5, 2015 Optimizing Your Loved One’s Learning and Potential at School
Children with rare diseases sometimes suffer different obstacles and challenges while attending school. However, there are certain programs and resources (such as 504s and IEPs) available that can help. This webinar covers these and the process by which to obtain them.
November 2, 2015 RARE Webinar: RARE Patient Impact Grant- FAQ
Learn all you need to know to qualify and apply!  Offered to RARE Foundation Alliance members, which include nonprofit organizations and support groups serving rare patients and families, grants are intended to provide direct assistance to patients.
November 17, 2015 RARE Webinar: Introducing Dr. Petra Kaufmann, NCATS ORDR
The purpose of this Webinar is to provide the rare disease community with the opportunity to hear directly from Dr. Kaufmann about her new role, her plans for the Office and most importantly, how she wants to engage with the rare disease community.  Questions will be taken from attendees participating in the Webinar and fielded by the moderator, Daniel Levine, producer of Global Genes’ RARECast podcast.
November 18, 2015 Learning More About Informed Consent
Access to clinical trial data is only given by way of informed consent. However, informed consent is an area that many don’t fully understand. This webinar will cover exactly what informed consent is, the scenarios when it is needed, and what universal consent is.
December 15, 2015 World Rare Disease Day 2016 Planning
Since 2013, Global Genes has been offering a very popular and fun webinar to energize, inspire, and educate those within the community to prepare them for one of the biggest events of the year: World Rare Disease Day!

 2015 RARE Webinars are proudly supported by

2014 Webinars

Click topic title to download recorded webinar and materials

Date Topic
April 2014 Navigating Health Insurance Issues, Part 1
Health insurance coverage for patients with rare diseases has undergone significant changes in recent years. Find out how you can better evaluate what option is best suited for your individual needs.
June 2014 Navigating Health Insurance Issues, Part 2
This webinar provides further discussion on questions and concerns following Part 1 with an in-depth focus for the rare disease community– from the rare disease community!
July 2014 Using Successful Online Fundraising Strategies
Online fundraising has made it easier to raise money to support your cause at anytime, anywhere. This webinar will address the steps you can take to ensure your fundraising efforts run more successfully. 
September 2014 2014 RARE Patient Advocacy Summit – Recorded Live Webcast
The purpose of the RARE Patient Advocacy Summit is to help patient advocates become successful activists, by providing insights and tools to move them down their path, equipped and prepared.
December 2014 World Rare Disease Day 2015 Planning
Ideas and suggestions to host a Rare Disease Day event

2014 RARE Webinars are proudly supported by

2013 Webinars

Click topic title to download recorded webinar and materials

Date Topic
Jan. 2013 Importance of Newborn Screening Awareness
March. 2013 Understanding Drug Development  
May 2013 Essential Health Benefits  
July 2013 Understanding Rare Disease Registries, Part 1 
Sept. 2013 2013 RARE Patient Advocacy Summit – Recorded Live Webcast
Oct. 2013 Understanding Rare Disease Registries, Part 2 
Nov. 2013 Caregiver Support and Resource
Dec. 2013 World Rare Disease Day 2014 Planning