RARE Webinar Series

Global Genes 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
September 11-12, 2014 2014 RARE Patient Advocacy Summit - Live Webcast
A rare diagnosis changes everything. It crashes plans and dreams, knocks you off your feet, and requires a continual investment of time and money as you try to determine what should be your next step. The purpose of the RARE Patient Advocacy Summit is to help patient ADVOCATES become successful ACTIVISTS and provide the discussion, insights, and tools to move down this advocacy path, equipped and prepared. View summit agenda for times and topics.
Register here!
July 30, 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 smoothly and successfully. 
June 18, 2014 Navigating Health Insurance Issues, Part 2 Webinar
This webinar provides further discussion on questions and concerns following Part I and an in-depth focus for the rare disease community– from the rare disease community! Panelists will detail points to consider when attempting to overcome obstacles to accessing your provider or treatment in health. 
April 30, 2014 Navigating Health Insurance Issues, Part 1 Webinar
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.
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

2014 RARE Webinars are proudly supported by

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