Question 1

What time should I arrive?

Accepted Answer

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.

Question 2

Where should I park?

Accepted Answer

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

Question 3

When is the summit?

Accepted Answer

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.

Question 4

Where will the summit take place?

Accepted Answer

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.

Question 5

I (or someone I am bringing) needs accommodations. Who can I contact to request this?

Accepted Answer

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.

Question 6

I have questions on the current status of research for my family. What can you tell me?

Accepted Answer

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.

Question 7

I need help with navigating patient care services. Who can help me find more information?

Accepted Answer

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.

Question 8

Should I bring my child to this event? Is this a child-friendly event?

Accepted Answer

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.

Question 9

What is the venue space like?

Accepted Answer

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

Question 10

Will the summit include a dedicated session or discussion highlighting recent advancements in the diagnosis, management, and treatment of my specific rare disease?

Accepted Answer

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.

Question 11

Will there be opportunities to meet with specialists or researchers actively involved in these areas?

Accepted Answer

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

Question 12

Are families invited to develop and present a poster outlining their clinical journey, such as our experience with a specific rare disease?

Accepted Answer

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.

Question 13

Could you provide detailed guidelines, including poster format, required elements, and specific focus areas that align with the summit’s goals of bridging science and care?

Accepted Answer

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).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 TBD - More information to followMore 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?

Question 14

Where will the poster hang?

Accepted Answer

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.

Question 15

Is there any funding or financial assistance available to help families with travel or lodging expenses to attend the summit?

Accepted Answer

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

Question 16

Will the summit be streamed anywhere so I can watch it online? Will you also offer zoom?

Accepted Answer

We do not plan to stream the summit.

Question 17

Will participants be able to use the Wi-Fi at the venue?

Accepted Answer

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

Pediatric Rare Disease Summit

Bridging Science & Care

Overview

Our exciting agenda will include:

Agenda

Pediatric Rare Disease Summit: Frequently Asked Questions (FAQ)