Patient organizations, academics, researchers, industry, government agencies, and health care professionals are invited to submit a poster abstract for the 2021 RARE Patient Advocacy Summit, happening virtually September 27th – 29th, 2021.

All submissions must be received by 5pm ET on August 25th, 2021 in order to be considered for the 2021 program.

Submit An Abstract




  • Poster Abstract submission period opens July 26th, 2021
  • Abstracts must be submitted by 5pm ET on August 25th, 2021 
  • Notification of Acceptance will be issued on August 27th, 2021 
  • Posters will be available for the duration of the program from September 27 – 29, 2021

Please be prepared to include these materials with your submission:

  • Presenting author’s contact information
  • Poster title and abstract (preferred length under 700 words)
  • Brief biography for presenting author (additional presenter bios may be included)


For the 2021 RARE Patient Advocacy Summit, poster abstracts are welcomed within the following areas of work:

  • Collaborative Approaches to Collective Challenges in Rare Disease Research & Advocacy
  • Health Equity, Diversity and Inclusion (US or International)
  • Financial Advocacy, Financial Toxicity and Burden of Care

We specifically encourage patients, advocates and nonprofits to submit abstracts on their related projects to highlight the great work happening throughout the rare disease community.

Presenters will incur all costs* and responsibilities of presenting, including registration fees and materials. Presenters must register for the event in order to access the poster booth**. A registration link will be provided upon abstract acceptance. 

*Scholarship opportunities may be available for qualified patients, advocates and researchers; Please contact Anne Wolfe at [email protected] to inquire. 

**Presenters are encouraged to attend the virtual program, but if unable to attend may send their poster for display. Contact Global Genes to discuss arrangements. 

Accepted posters will need to submit the following final materials for presentation by September 16th, 2021: 

  • A poster to be presented digitally (PDF).
    • Posters should include data (summary, method, evaluation, results, demographics, etc.) for consideration.
    • Preliminary and pilot data will also be accepted.
    • Posters should be sized for a 16:9 viewing ratio.
  • A final poster abstract.
  • A 3-5 minute video summarizing your research or key highlights (optional).
  • Presenting author(s) headshot(s) and short bio(s). 



Is there an abstract submission fee or other presenter costs?
There is not a fee to submit an abstract. However, accepted poster presenters must register for the event in order to attend and access their virtual poster/booth. Poster presenters may register at the discounted rate of $75.00* and registration details will be provided upon acceptance. 

*If the registration fee presents a barrier to access for you, please reach out to Anne Wolfe at [email protected] to discuss potential scholarship opportunities.

Are there rules about previous presentation of data?
Encore presentations are permitted. All abstracts will undergo review by the Abstract Review Committee for evaluation and acceptance.

Is a trial-in-progress abstract allowed?

Is there an author limit for abstracts?

Is there a word limit or character count to which we should adhere? 
700 words, Charts and graphs are acceptable.

What are the Embargo Rules, if any?
None for encores; for primary disclosures, scientific dissemination should be reserved until after the Conference. Press releases and media coverage are allowed in advance of the Conference.

Is there a language requirement for the abstracts?
English is preferred.

What will be included in the virtual poster booth?
Booths will include your abstract, presenter information, poster, video and live chat. There is also an option to add scheduling links and/or zoom links if you’d like to video chat with the attendees. Further details will be provided to accepted presenter

What technology are you using? Is it complicated? 
All accepted poster presenters will have an opportunity to participate in a virtual training session with the technology support team for the event. Further details regarding the platform, login details, and technologies will be available for accepted presenters. 

I still have questions, who can I reach out to?
Please contact Anne Wolfe at [email protected] for any questions about poster presentations. 

Who should the authors be? How do I determine my authors?
For the 2021 Patient Advocacy Summit, it is strongly encouraged that an author or collaborator from a patient advocacy group be listed. Representatives of members of the Global Genes Foundation Alliance are encouraged to apply and be listed as authors. 

Why should you create a poster? 
Poster presentations 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.

Are there any tips for creating an “attractive” poster/abstract?

  • The title of the poster is very important to draw attention, like a good news headline.
  • There are ppt poster templates available from various sites. 
  • An abstract is important to attract an audience to review your poster presentation in more detail.
  • Make it simple, easy to read, organized and presentable.
  • Add a patient picture, story, or perspective as it will make the poster more attractive.