Week in RARE

Join us in Kansas City, Missouri for the 2024 RARE Health Equity Forum and RARE Advocacy Summit!

September 25, 2024 – September 28, 2024

Register Now See Agenda

A week of exciting events!

Global Genes is on the move — Week in RARE is moving to Kansas City, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation.

RARE Advocacy Summit

Thursday & Friday, September 26 & 27, 2024

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 to work together to build a path to hope. This is an unparalleled opportunity for advocates, whether new or veteran, 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 improve care and accelerate change.

Join us for networking, learning and inspiration.

RARE Health Equity Forum

Saturday, September 28, 2024

The RARE Health Equity Forum is the first one-of-a-kind event focused on the intersection of rare disease and health equity with an agenda built around creating systemic and organizational change. The conference was developed to better understand the persistent gaps that exist in the rare disease community for underrepresented and/or marginalized patient populations, including those who are still seeking a diagnosis or are unaffiliated with a disease-specific foundation.

In its fourth year, the theme of the event will be “Together in Equity, Driving Change”. Through plenary sessions, networking and interactive table talks, the event empowers attendees with actionable tools and strategic insights to advocate for a more inclusive rare disease community. 

RARE Champions of Hope

Groundbreakers. Leaders. Advocates

Friday, September 27, 2024

The RARE Champions of Hope awards celebrate, honor and recognize those in the rare disease community who are raising the bar through their innovative approaches to research, programming and advocacy to create meaningful impact in the rare disease space. Awardees are beacons of hope in the rare disease community who lean in, take risks and lead collaborative efforts to positively impact the lives of rare disease patients, caregivers and families across the globe. The awards ceremony will take place during the RARE Advocacy Summit.

Membership & Advisory Meetings

Wednesday, September 25, 2024

Every year at the RARE Advocacy Summit, the members of the Global Advocacy Alliance and RARE Corporate Alliance meet to discuss what went well this year, and where progress needs to be made. If you are a member of either group, look for an email invitation from your Global Genes contact.

If you are not a member of either group yet, now is a great time to join to take advantage of the benefits of the alliance, and meet with fellow members at the Summit during the annual meeting.

2024 Week in RARE Agenda at a Glance

Agenda Subject to Change; All times are Central Standard Time

Wednesday, September 25:
Membership Meetings & Freshman Orientation

Registration Open: 1pm – 5pm
Corporate Alliance Meeting: 1pm – 3pm
Global Advocacy Alliance Networking: 4:30pm – 6:30pm
Freshman Orientation: 4pm – 5:30pm

Thursday, September 26:
RARE Advocacy Summit

Registration Desk Open: 7am – 5pm
Breakfast Buffet: 7:30am – 8:45am
Opening Keynote: 9am – 10am
Breakout Sessions: 9:15am – 4:15pm
Expert Office Hours: By Appointment Only
Exhibits Open: 9am – 5pm
Lunch Buffet: 12:30pm – 1:50pm
Closing Plenary 4:30pm – 5:30pm
Welcome Reception hosted by RareKC: 5:30pm – 8:30pm

Friday, September 27:
RARE Advocacy Summit

Breakfast Buffet: 7:30am – 8:45am
Opening Plenary: 9am – 10am
Breakout Sessions: 9:15am – 4:15pm
Expert Office Hours: By Appointment Only
Exhibits Open: 9am – 5pm
Lunch Buffet: 12:30pm – 1:50pm
Closing Plenary: 4:30pm – 5:30pm
Champions of Hope Awards: 5:30pm – 6:30pm
Champions of Hope Reception: 6:30pm – 8:30pm

Saturday, September 28: RARE Health Equity Forum

Registration Desk Open: 7am – 5pm
Breakfast Buffet: 8am – 9am
RARE Health Equity Forum Keynote Address: 9am – 9:30am
Sessions: 9:30am – 5:30pm
Lunch and Table Talks: 12pm – 2pm
Week in RARE Closing Reception: 5:30pm – 7:30pm

RARE Advocacy Summit Speakers

Mackenzie Abramson

Global Genes

Dustin Baldridge, M.D., Ph.D.

Washington University in St. Louis

Raymond Belanger-Deloge, M.S., C.G.C.

Boston Children’s Hospital Rosamund Stone Zander Translational Neuroscience Center

Lara Bloom

The Ehlers-Danlos Society

Wendy Chung, M.D., Ph.D.

Boston Children’s Hospital

John F. Crowley, J.D.

Biotechnology Innovation Organization (BIO)

Suzanne Edison

CureJM Foundation

Jessica Fein


Kendra Gottsleben

Center for Disabilities

James Griffin

EveryLife Foundation

Christina Gurnett, M.D., Ph.D.

Washington University in St Louis

Melissa Haendel, Ph.D.

University of North Carolina Chapel Hill

Michele Herndon, M.S.N., R.N.

Undiagnosed Diseases Network Foundation

Michael Hund

EB Research Partnership

Erica Jones

Simons Searchlight

Richie Kahn

Canary Advisors

Jeff Levenson, D.D.S.

Adult Polyglucosan Body Disease Research Foundation

Lori Renna Linton

European Reference Network for Rare Neurological Diseases (ERN-RND)

Kasha Morris, M.S.

TANGO2 Research Foundation

Megan Nolan

Rare Parenting Magazine

Stephanie Riordan

EveryLife Foundation

Claudia Parker

Claudia Parker Portraits

Charlene Son Rigby

Global Genes

Ashley Point

Koolen-de Vries Syndrome Foundation

James G. Robinson

Author, More Than We Expected

Abigail Sveden, M.S., C.G.C.

Boston Children’s Hospital

Shannon von Felden, M.P.P.

EveryLife Foundation

John Wilbanks

Broad Institute

RARE Health Equity Forum Speakers

Siwaar Abouhala

Broad Institute

Claudia Conzaga-Jauregui, Ph.D.

International Laboratory for Human Genome Research, UNAM

Suzanne Edison

CureJM Foundation

Abdallah (Abe) Elias, M.D., F.A.C.M.G.

Shodair Children’s Hospital

Nadia A. Falah, M.D.

Johns Hopkins All Children’s Hospital

Melissa Haendel, Ph.D.

University of North Carolina Chapel Hill

Cecile Jones

Richie Kahn

Canary Advisors

Rivkah Beth Medow


Randi Rader

Fatima Scipione

Blueprint Medicines

Tanvee Varma, M.D.

Brigham and Women’s Hospital

Michele Wright, Ph.D.

National Organization of African Americans with Cystic Fibrosis (NOAACF)

Advocate Support 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.  

Key Dates:

  • May 15: Advocate Support application opens
  • July 12: Applications close at 12:00 pm (noon) ET
  • August 5 – 9: All status notifications will be emailed

Submit a Poster

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.

Key Dates

  • Poster Abstract submission period opens May 15, 2024
  • Abstracts must be submitted by 5pm ET on  August 9, 2024
  • Notification of acceptance will be issued on August 23, 2024
Submit Poster Abstract More Information

Become an exhibitor and connect and engage with advocates, patients, and partners in the rare disease community at Week in RARE.

Exhibitor space will be open for attendees Thursday, September 26 through Saturday, September 28.

Plan Your Visit

Loew’s Hotel – Kansas City
1515 Wyandotte Street
Kansas City, Missouri, 64108

Global Genes has secured a discounted room block at the rate of $239.00 + 18.475% tax. Rooms are available on a first-come, first-served basis and all reservations must be made by September 3, 2024. Reserve early as the block does sell out. To reserve your room, click the link below or call (877) 748-1451 and reference group GLG923.

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

Delta: You may also call Delta Meeting Network® at 1.800.328.1111 Mon – Fri, 8:00 AM – 6:30 PM (EST) and refer to Meeting Event Code NY39F, or click the button below.

United: Call United Meetings Reservation Desk Mon – Fri at (800) 426-1122 and use discount code ZPH3668157 or click the button below.

Interested in supporting this year’s Week in RARE?

Title Sponsor


Platinum Sponsor

Gold Sponsor


Silver Sponsors

Chiesi global rare diseases

Bronze Sponsors

Amicus Therapeutics
Blueprint Medicines
Mallinckrodt Pharmaceuticals

Partner Sponsors

Avidity Biosciences
Catalyst pharmaceuticals
travere logo

RARE Champions of Hope Reception Sponsor


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