RARE Webinars

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.


2018 Webinars

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March 27, 2018Epidermolysis Bullosa Community
The purpose of the webinar is to provide the Epidermolysis Bullosa community with accurate and up to date information on the results of the phase three trial of SD-101. As you know, on September 13th, 2017 Amicus Therapeutics Announced that top-line data from the randomized, double-blind, placebo-controlled Phase 3 clinical study (ESSENCE, SD-005) to assess the efficacy and safety of the novel topical wound-healing agent SD-101 did not meet the primary endpoints or secondary endpoints in participants with epidermolysis bullosa (EB). Amicus Therapeutics is committed to ensuring that the Epidermolysis Bullosa community is provided with the results of the phase three trial of SD-101 and would like the opportunity to present this information to the community via webinar.
June 26, 20182019 RARE Patient Impact Grant FAQ 
The RARE Patient Impact Grant is an exclusive opportunity offered to our Foundation Alliance. The purpose of the grant programis to help extend capacity of foundations to meet a greater need for their community. Leanr more about the RARE Patient Impact Grant program; hear key dates, new changes and the application process. 
July 11. 2018Collaboration Among Foundations
Today, advocate and patients are becoming drivers in the rare disease community, but it will be hard to make strides without coming together and working towards the same goal. Join us for this RARE Webinar to discuss how foundations can break down any barriers and work together to achieve foundation and rare disease goals. Gain advice and learn best practices from those who have already taken the first steps in cross foundation collaboration.
December 12, 2017Disabilities in the Workplace
Whether you are just entering the workforce or have been there for years, many rare disease patients may not know all of their rights or how or when to access them in the workplace as an individual with disabilities. This webinar will provide information on laws and services that exist for the disabled in the work environment as well as provide guidance in navigation, disclosing, and requesting accommodations for your disability.

2018 RARE Webinars are proudly supported by


2017 Webinars

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February 1, 2017Health Insurance 101: How to Navigate Your Insurance as a Rare Disease Patient 
Anyone can tell you that navigating insurance is no easy task. Whether you have no medical needs or have an abundant, learning definitions, healthcare plans and the appeal process call for a basic guide. Find your go to guide on our webinar where you will get to hear from experts in insurance and learn how to read an insurance plan, navigate the insurance system, and get the benefits you need in order to manage your rare disease.
June 13, 2017Make Sense of Your Dollars
A rare disease diagnosis is something that no one can plan or prepare for and it can often lead to financial burdens, but with the right guidance in financial planning, you can overcome these budgeting obstacles. Listen in to hear professionals in finance guide you through money management and budget preparation.
June 27, 2017RARE Patient Impact Grant Webinar and Q&A
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.
August 22, 2017Building the Bridge between Foundations and Industry
Are you a foundation looking for an industry partner? How about a biotech/pharma company looking to know about your patient community? This can be a tough gap to fill between these two worlds. How do you start? Who do you talk to? Learn the tricks to go build your own bridge and find out from a foundation and industry partnership the ins and outs of building and maintaining a relationship between these two industries.


2016 Webinars

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April 26, 2016Understanding Gene Therapy
Scientific discovery is advancing rapidly, and new frontiers in gene therapy may yield promise for new rare disease treatments. You may have heard the term gene therapy and even know a little bit about the science, but this webinar will cover all the basics and walk through the potential impact on the rare disease community, including case study examples of collaborations between companies and patient advocacy groups.
June 21, 2016Strategies for Effective Fundraising
Fundraising is a top priority for any foundation or organization delivering programs and services to the rare disease community. The world of fundraising contains a variety of avenues to pursue, but how do you make your organization stand out from the crowd? This webinar will walk through some best practices for applying for grants, creating fundraising events and building an individual donor base.
August 9, 2016Keys to Effectively Communicate with Health Care Providers
Do you ever find it difficult to inform your physician about your rare disease–from symptoms to research to finding support to cope with your diagnosis? Navigating communication between you and your healthcare team at times can be challenging, but working together is important in your rare disease journey. This Webinar will offer insight from both the healthcare provider and patient perspective on how to effectively discuss your rare disease and build a strong healthcare team together.
November 22, 2016Transition of Care: Planning for Care for Children with a Rare Disease
As caregivers age, preparing for your loved one’s future can be daunting. It may be difficult for both you and the loved one in your care as you both transition into new roles and new chapters in your life. How do you plan for care for your adult child living with a rare disease–both physically and financially. This Webinar will discuss topics such as housing, financial planning, social support, and emotional obstacles to help you manage life changes.
December 7, 2016To learn more about Rare Disease Day on Capitol Hill, click here to find out about the webinar put on by our friends at RDLA 

2016 RARE Webinars are proudly supported by

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2015 Webinars

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April 1, 2015How 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, 2015Leveraging 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, 2015Optimizing 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, 2015RARE 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, 2015RARE 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, 2015Learning 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, 2015World Rare Disease Day 2016 Planning
World Rare Disease Day is less than three months away! Join Global Genes for this 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!

 2015 RARE Webinars are proudly supported by

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2014 Webinars

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April 2014Navigating 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 2014Navigating 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 2014Using 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 20142014 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 2014World Rare Disease Day 2015 Planning
Ideas and suggestions to host a Rare Disease Day event

2014 RARE Webinars are proudly supported by

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2013 Webinars

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Jan. 2013Importance of Newborn Screening Awareness
March. 2013Understanding Drug Development  
May 2013Essential Health Benefits  
July 2013Understanding Rare Disease Registries, Part 1 
Sept. 20132013 RARE Patient Advocacy Summit – Recorded Live Webcast
Oct. 2013Understanding Rare Disease Registries, Part 2 
Nov. 2013Caregiver Support and Resource
Dec. 2013World Rare Disease Day 2014 Planning