RARE Webinar Series

Global Genes | RARE Project, in partnership with Shire and Bayer, will be hosting a series of educational webinars geared towards educating patient advocates and caregivers on a variety of topics. Please join subject matter experts in discussions about pressing issues that affect rare disease patient advocates regardless of disease. There is a lot to be learned and many benefits to creating a platform for sharing best practices.

This RARE Educational Webcast Series is an important resource for those looking to become more involved and empowered around topics related to rare disease advocacy.

 * 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.

 

2014 Webinars

click topic title to download recorded webinar and materials

Date Topic
April 30, 2014 Navigating 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.
Register today!
February 2014 Rare Genetic Diseases:  An Exploration of the Clinical, Diagnostic, and Psychosocial Elements
Approved for .1 CEU credit through NSGC for clinical geneticists
How to support undiagnosed patients, whole exome sequencing, current trends, and Global Genes programs for the rare and undiagnosed community.
Hosted by Ambry Genetics

 

2013 Webinars

click topic title to download recorded webinar and materials

Date Topic
December 2013 World Rare Disease Day 2014 Planning Webinar
Ideas and Suggestions to Host Your Own World Rare Disease Day Event
Sponsored by Shire and Bayer
November 2013 Caregiver Support and Resource Webinar
Taking Care of Yourself While Taking Care of Your Loved Ones
Sponsored by Shire and Bayer
October 2013 Understanding Rare Disease Registries Webinar, part 2
Understanding of design, implementation, and resource considerations that are the foundations of a successful registry
Sponsored by Shire and Bayer
September 2013 RARE Patient Advocacy Summit
Recorded Webcast from Live Conference
* Caregivers – First Put on Your Own Oxygen Mask
* Effective Collaboration: The Path to Reaching Our Goals
* Partners Panel: Creating Strong Alliances
* RARE Foundation Alliance
* Platforms Panel: Connecting Your Community Online
* RARE Policy Update
* Drug Development 101
* Conversation with the Experts: Social Media
* Conversation with the Experts: Fundraising
* Conversation with the Experts: Public Relations
July 2013 Understanding Rare Disease Registries Webinar, part 1
Understanding of design, implementation, and resource considerations that are the foundations of a successful registry
Sponsored by Shire and Bayer
May 2013 Essential Health Benefits Webinar
How this provision under the Affordable Care Act could affect access to rare disease therapies and treatments.
Sponsored by Shire and Bayer
March 2013 Understanding Drug Development Webinar
Opportunities for Rare Disease Patients and Advocates to Speed Development of New Therapies
Sponsored by Shire and Bayer
January 2013 Importance of Newborn Screening Awareness Webinar
Sponsored by Shire and Bayer