2025 RARE Advocacy Exchange Registration

Global Genes’ RARE Advocacy Exchange is a virtual event designed to empower, equip, and elevate individuals with the leadership and communication skills for personal growth, effective advocacy, and stronger communities. This event is a series of 8 sessions throughout 2025. Fill out the form below to register and select your sessions. We look forward to collaborating with you throughout the year!

First Name

Last Name

Email Address

Which of the following describe(s) your role(s) in the rare disease community? Please select all that apply.

Academia	Advocate	Caregiver
Government	Healthcare Professional	Industry
Media	Patient	Scientist/Researcher

What are your diseases/disease areas of interest? Add as many as apply. If you do not find a disease, please type it in. If you are disease-agnostic or pan-rare, type in All Rare Diseases. If not applicable, type in "NA"

Clinical Entity Id

Will you be attending on behalf of a patient advocacy organization?

YesNo

Please select the organization below. If you cannot find your organization, type it in.

Account Id

Your Title at Selected Organization

Please check off the Exchange sessions for which you are signing up. Note, all are selected by default.

April 10, 2:30pm EST | Thinking Outside of Your Inbox, Innovative Fundraising Opportunities
May 8, 2:30PM EST | Leadership: From Conflict and Competition to Cooperation and CollaborationJune 5, 1 pm EST | Interacting with FDA: PFDD and Listening Sessions
Sept. 18, 1pm EST | Getting A Precise Diagnosis is Critical for Adults & ChildrenSept. 18, 2:30pm EST | Rare Disease Grief is a Sneaky Bitch: Grieving a RARE Diagnosis
Oct. 16, 1pm EST | Knowing the Rights for Your RARE Child (and Yourself!)

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