Sunday, September 26 through Wednesday September 29, 2021

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

We’re thrilled to bring this year’s #GGSummit right to your screen, making it safe and easy for you to connect and engage with others in the rare disease community from around the world! Join us for a variety of interactive and educational events, meet-ups, workshops, and networking opportunities. 

With more than 30 live sessions, 3 learning tracks, and 70 speakers, you’ll gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies you can implement to accelerate change.

This year’s summit experience will include the first-ever International Regional Meetings, with special series from Southeast Asia, Africa, and Australasia, providing a new opportunity for global attendees to connect with peers in a brand new way.


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View The Agenda



Why attend?

  • Access the latest resources, information, and tools
  • Connect with your peers and speakers in chat and discussion boards, and event sponsors in the virtual exhibit hall 
  • Engage with rare international leaders in our first-ever international regional meetings
  • Watch film selections from The Disorder Channel, and hear from their directors
  • Browse the virtual poster hall to learn from case studies in rare collaboration, health equity, financial advocacy, and more
  • At $35 for patients, caregivers, and advocates, it’s one of the lowest priced summits in town


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No matter where you are on your rare journey, there are sessions designed to inspire and empower – from a keynote shining a light on progress in genomic science, to inspiring stories that will leave you considering the “impossible thing”. Slide into one of three tracks designed to meet you where you are, and help you move to the next level, including:

  • Track 1: Rare Life & Patient Support – sessions on coping strategies for parents and caregivers, grief and anticipatory loss, addressing the needs of adult & senior rare disease patients, stories from siblings of rare patients, and challenging taboos in sex, gener and sexuality in rare patients
  • Track 2: Tactics & Capacity Building – sessions on organizational planning for nonprofits, developing impactful tools for your community, developing self-advocacy and storytelling plans, EDI in your community, and putting together a digital strategy for your organization
  • Track 3: Leadership Skills Lab – focus on building sustainable cultures for your organization, making the most of limited resources by creating research collaborations and partnerships, and negotiating and resolving conflicts


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International Regional Meetings

Australasia: September 26 – 7:00pm AEST, 5:00pm MYT, 10:00pm NZDT

South Asia: September 27 – 5:30pm IST, 8:00pm CST, 5:00pm PKT

Africa: September 27 – 10:00am WAT, 11:00am SAST

Join patients and caregivers from around the world to hear stories, perspectives, and gain understanding about the regional rare disease landscape, including clinical trial access and new therapeutic development. Hear patient and advocate stories and panel discussions with organization leaders and experts from Australia, New Zew Zealand, Malaysia, Singapore and Thailand/India, China, Pakistan, Bhutan and Sri Lanka/West and South Africa.

Know your country’s registration code? Enter it when you register to attend the summit at no cost! Need your country’s code? Contact us at [email protected].


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From: 09/27/2021 - To: 09/29/2021

All day event

Virtual Event: