8:30 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 Merck Research Laboratories: 333 Longwood Garage - 5-minute walk LAZ parking - 7-minute walk Longwood Galleria Garage - 7-minute walk 200 Longwood Ave Garage - 8-minute walk SP+ Parking - 8-minute walk 180-184 Longwood Ave Parking - 8-minute walk Pilgrim Road Garage - 11-minute walk MFA Parking - 11 minute walk Hale Building Parking - 12-minute walk 690 Huntington Ave Parking - 12-minute walk

The Pediatric Rare Disease Summit - Bridging Science & Care on Tuesday will be on April 29th, 2025. Registration begins at 8:30am and the summit will conclude at 6pm.

The summit will take place at Merck Research Laboratories located at 33 Avenue Louis Pasteur, Boston, Massachusetts, which is located a 3 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 Shira Rockowitz 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 auditorium that seats 200. The poster session takes place in an adjacent hall surrounding the auditorium.

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.

General Formatting Required Dimensions: 24 in x 36 in (vertical) Templates below can be used. Please note you can adjust/move the template sections and texts as needed, but please adhere to the required dimensions and formatting detailed here. Scientific Poster Template Patient/Family/Caregiver Poster Template Patient Advocacy Group (PAG) Poster Template Required Components Title Authors and Affiliations Logos if applicable Font Recommendations Generally no smaller than size 20 Titles: Size 40 or larger Captions and Body: Size 24 or larger Font Type: Open Sans, Arial, or Calibri Be mindful of colors and legibility between background and font Use high resolution pictures Review what your poster looks like at 100% scale Keep it simple Use patient-friendly language Bullet points can be helpful Use meaningful and purposeful images Consider the use of visuals instead of text Consider using QR codes or having flyers if it is helpful Printing Posters can be printed at any printing location (e.g., Staples, FedEx) and brought to the Summit. There is also a local location PhDPosters. Typically these places should be able to print with next day pick for $28.99 (PhD Posters), $33 (Staples) or $34.50 (FedEx). If printing at the local PhDPosters location, we provide a poster pick-up service and your poster will be available at the conference venue. To use this service, you must place an order by April 20th at 12am EST. Use this link to submit your poster for printing at PRDS: https://phdposters.com/event/188/pediatric-rare-disease-summit-2025 More instructions on when, where, and how to hang your poster at the conference will be provided on the day of the conference. Optional Instructions to follow. For those who asked for additional guidance: Scientific Poster Components Introduction Methods Results Conclusions Patient/Family/Caregiver Poster May follow the Scientific Poster components or below suggestion, but not required. Introduction/Our Story Tell 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 Us What 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 Know How 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 Hope What ways have you found support, hope, or community? What organizations have you found helpful? How can someone get involved or help? Patient Advocacy Group (PAG Poster) May follow the Scientific Poster components or below suggestion, but not required. Introduction/Our Story Tell 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 Us How 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 Know What 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 Community What 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.