2023 RARE Advocacy Summit

September 19, 2023 – September 21, 2023

Register now View Agenda

Connect. Inspire. Learn

Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Advocacy Summit.

This is an unparalleled opportunity to forge meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees with insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can take home and implement immediately to accelerate change. This year, the Summit will be held in San Diego California. Join us for networking, learning and inspiration.

Who Should Attend?

* Patient advocacy group leaders

* Rare disease patients

* Caregivers

* Rare disease advocates

2023 Speakers

We will be announcing the speakers for the 2023 RARE Advocacy Summit after registration launches. Check back for a complete list of speakers soon!

Advocate Support Program

The Advocate Support Program is offered to offset the cost associated with attending the 2023 RARE Advocacy Summit. Advocate Support will cover a portion of your meeting and travel expenses for the conference.

Advocate Support (formerly known as stipends) is available to individual patients, close family and friends of advocates in the rare disease community, or staff (paid/volunteer) of rare disease nonprofit organizations or support groups.  

Poster Submissions

Posters provide an opportunity for you to share the work of your organization, team or community with a larger audience of rare disease stakeholders from advocacy, research and industry. Showcasing ongoing or completed projects often can provide new connections/opportunities to meet new collaborators and/or potential funders. If you are interested in submitting a poster, click the button below to see poster guidelines for the RARE Advocacy Summit.

Become an Exhibitor

Position yourself at the center of the RARE community. A limited number of exhibit tables are available at this year’s RARE Advocacy Summit.

Exhibit Tables include:
* 1 – 6ft table
* 2 chairs 
* 1 waste basket
* 1 full event passes  

Corporate (Non-Corporate Alliance Member) $7,500
Corporate Alliance Member $5,000
Non-Profit Organization/Academic Center $1,500
Global Advocacy Alliance Member $350

The deadline to reserve your booth is Monday, July 31. 

Please note: Once your application is complete, you will receive a follow-up email providing more information, e.g. exhibitor form, booth selection, your exhibitor kit, and a specific code to use for registering for your free pass. Please allow up to 1 week to receive this email. An exhibit hall floor plan with assigned booth will be available in August.

Plan Your Visit

Book your hotel room before August 11th to secure a special conference rate. All conference room block reservations are in the Marina Tower.

Airfare Discounts: Delta and United are partnering with Global Genes to offer attendees discounted airfare!

Delta: Call Delta Meeting Network® at 1.800.328.1111* Monday–Friday, 8:00 a.m. – 6:30 p.m. (EST) and refer to Meeting Event Code NM2KV or click the button below.

United: Call United Meetings Reservation Desk Monday – Friday at (800) 426-1122 and use discount code ZNJJ289948 or click the button below.

A Look Back at the 2022 Patient Advocacy Summit

2022 Recap

Check out some stats from our event last year.

2022 Rare Patient Advocacy Summit Stats

Thank You to Our Sponsors!

Champion Sponsor

Title Sponsors

Presenting Sponsor


Gold Sponsors

Chiesi global rare diseases

Silver Sponsors

Alliance Rx
Avidity Biosciences
Jazz Pharmaceutical
Spark Therapeutics

Track Sponsors

Sangamo Therapeutics

Partner Sponsor


Advocacy Support Sponsors

Chiesi global rare diseases

Exhibit Booth Sponsors


Champions of Hope support