8 AM – 9 AM will be breakfast and registration, with speakers kicking off the Opening Remarks at 9 AM. We recommend arriving early to avoid congestion at entrances.

The Longwood Medical Area can be quite busy in the mornings. We recommend using public transportation or Uber and arriving early to avoid congestion at entrances. Here are some nearby parking options within walking distance of Joseph B. Martin Conference Center: SP+ Parking - 1-minute walk 200 Longwood Ave Garage - 4-minute walk 180-184 Longwood Ave Parking - 4-minute walk 333 Longwood Garage - 6-minute walk Longwood Galleria Garage - 7-minute walk 690 Huntington Ave Parking - 8-minute walk LAZ parking - 9-minute walk Pilgrim Road Garage - 10-minute walk MFA Parking - 11 minute walk Hale Building Parking - 12-minute walk

The Pediatric Rare Disease Summit - Bridging Science & Care will be on Friday October 9th, 2026. Registration begins at 8:00am and the summit will conclude at 6pm.

The summit will take place at the Joseph B. Martin Conference Center located at 77 Avenue Louis Pasteur, Boston, Massachusetts, which is located a 5 minute walk away from the Boston Children’s Patient and Family Parking (on 2 Blackfan St). The event will be held on the first floor.

If you are deaf or hard of hearing, are a person with a disability who requires accommodation, or have special dietary needs please contact our organizing team at PRDS@childrens.harvard.edu.

If you have any specific questions about the research that is ongoing for your family, we encourage you to reach out to the research team you are working with directly.

Regarding making medical care more integrated and facilitating the process of finding specialists: your care team, the Hale Family Center, Division of General Pediatrics, and the Integrated Care Program, which includes Care Mapping, are helpful resources. We also encourage you to bring any questions or comments that would be of general interest (like this) to the summit.

While all are welcome, younger children may not find this as fascinating as we do! Our planned content would likely be okay for a mid- to late teenager. As you may note on the agenda, the event centers around talks and panel discussions. Please note the event encourages a networking environment for parents/guardians/caregivers, physician scientists, and patient support groups to connect and learn about the most up to date research and care in rare disease.

The symposium will take place in a large amphitheater that seats 475. The poster session takes place in an adjacent lobby near the amphitheater.

The summit will include discussion highlighting recent advancements in the diagnosis, management and treatment of rare diseases, but not a specific section dedicated to a specific rare disease.

There will be opportunities to meet with specialists/researchers actively involved in research of each specific rare disease.

You are invited to develop and present a poster outlining your clinical journey and experience. We will be organizing posters by rare disease, and your poster will be situated next to posters from other families with related rare diseases who decide to present a poster and researchers studying that rare disease.

Pediatric Rare Disease Symposium Poster GuidelinesGeneral FormattingRequired Dimensions: no larger than 48 in. x 48 in. Please note you can adjust/move the template sections and texts as needed, but please adhere to the required dimensions and formatting detailed here.Templates below can be used (optional, 42 in. x 42 in.):Scientific Poster TemplatePatient/Family/Caregiver Poster TemplateDisease Support Group Poster TemplateRequired ComponentsTitleAuthors and AffiliationsLogos if applicableFont RecommendationsGenerally no smaller than size 20Titles: Size 40 or largerCaptions and Body: Size 24 or largerFont Type: Open Sans, Arial, or CalibriBe mindful of colors and legibility between background and fontUse high resolution picturesReview what your poster looks like at 100% scaleKeep it simpleUse patient-friendly languageBullet points can be helpfulUse meaningful and purposeful imagesConsider the use of visuals instead of textConsider using QR codes or having flyers if it is helpful Printing Local Printing via PhDPosters: We have partnered with PhDPosters as a local printing option. If you choose this service, we will provide a pickup service and your poster will be available for you directly at the conference venue. You can order poster printing at this dedicated link: https://phdposters.com/event/214/pediatric-rare-disease-summit Cost: Approximate cost for printing is $43-57 depending on size. Financial Assistance: If you are a patient family and require assistance with printing costs, please reply to this email for further inquiry.Deadlines: Standard deadline for printing is Tuesday, October 6, 2026 at 7:00pm. The rush order deadline (with an additional fee of $35) is Thursday, October 8, 2026 at 7:00pm. Dimensions: PhD Posters has a maximum height dimension of 42” and the maximum width the venue can accommodate is 48”. Please note that they cannot print 48” x 48” posters.Alternative Printing: You may also print your poster at any professional printing service (e.g., Staples, FedEx) and bring it with you to the Summit.Cost, dimensions and deadlines depend on the service. Max poster size for the venue is 48” x 48”.More detailed guidance below if needed:Scientific PosterComponentsIntroductionMethodsResultsConclusionsPatient/Family/Caregiver PosterMay follow the Scientific Poster components or below suggestion, but not required.Introduction/Our StoryTell us about you and your family. How are you related to the patient?When did your rare disease journey start?What challenges have you/your family faced?How Research Has Impacted UsWhat research-informed care has you/your family received?How has research changed you/your family’s care?What research have you been involved with and what has worked for you?What research and/or support would make a difference?What We Want You to KnowHow has your rare disease affected your/your family member’s/patient’s daily life?What treatments and supports have you/they had?What are misconceptions or ideas that people may not understand or know about?What do you wish doctors/researchers would know/understand?Advocacy and HopeWhat ways have you found support, hope, or community?What organizations have you found helpful?How can someone get involved or help?Disease Support Group PosterMay follow the Scientific Poster components or below suggestion, but not required.Introduction/Our StoryTell us about your organization. Who does your organization involve?What rare disease(s) or area(s) do you support?What is the mission of your organization?How Research Has Impacted UsHow has research-informed care impacted your organization/your families?What research is your organization involved in or support?What research and/or support would make a difference?What We Want You to KnowWhat are important topics or issues to your organization/families?What are misconceptions or ideas that people may not understand or know about?What do you wish doctors/researchers would know/understand?Advocacy and CommunityWhat supports are available for patients/families/caregivers?How can someone get involved or help?What groups do you partner with?

Posters will be hung in the atrium of the venue. We will be organizing posters by rare disease. Each poster will be situated next to posters from families with related rare diseases who decide to present a poster, related disease support organizations and researchers studying the rare disease.

There is no fee to attend the summit, yet we are not able to support travel to, or accommodations in, Boston.

We do not plan to stream the summit.

Yes, there’s complimentary wi-fi all throughout the building.