The Marfan Foundation, in association with Children’s Healthcare of Atlanta, Emory Healthcare, and
The Emory Clinic, will host an in-person conference July 10-13, 2025 that provides people living with
Marfan syndrome, Loeys-Dietz syndrome (LDS), Vascular Ehlers-Danlos syndrome (VEDS), Stickler
syndrome, and related conditions, and their families an opportunity to learn about these conditions
from global medical experts, hear about the latest research, learn ways to improve their quality
of life and connect with other people living with genetic aortic and vascular conditions. Pictured above is Dr. Hal Dietz with young 2023 Conference attendees in Chicago.
To learn more or register for Conference, visit marfan.org/conference.
Expert providers enjoy interacting with community members and colleagues in a relaxed setting at Conference.
Foundation Professional Advisory Board (PAB) Member Gretchen MacCarrick, MS, CGC, said, “I’m looking forward to being a speaker at conference because I always learn from attendees what is on their mind and what their questions and observations are. It helps me go back and answer questions in my own clinic.”
“Learning from individuals at Conference helps to broaden my holistic view of living with a vascular connective tissue disorder in order to help me be a better care provider.” MacCarrick is a founding and current board member of the Loeys-Dietz Syndrome Foundation – a division of the Marfan Foundation. She works as a genetic counselor at Johns Hopkins Hospital.
On Saturday morning, July 12, the General Session will feature a series of expert-led presentations covering the latest information on genetic aortic and vascular conditions, including research, medical therapy, aortic surgery, physical activity, and mental health. In the afternoon, attendees can participate in small-group workshops led by experts in Marfan, LDS, VEDS, Stickler, and related
conditions. These interactive sessions will provide a more in-depth look at various topics related to
diagnosis, treatment, and medical concerns.
On Sunday morning, July 13, small-group workshops will continue, focusing on mental health, quality
of life, and peer-to-peer support. These sessions will offer practical coping strategies and hands-on
activities that attendees can integrate into their daily routines.
PAB member Dr. Sherene Shalhub, MD, MPH, Oregon Health & Science University said of Conference, “I’m truly looking forward to connecting with colleagues and sharing ideas that push our field forward. Being part of a forum that fosters collaboration is always energizing. The Conference creates a space where meaningful conversations happen. It brings together diverse voices, cutting-edge research, and practical strategies that strengthen our community and elevate our collective impact.”
Networking opportunities will be plentiful throughout the weekend, with events like the Creating Connections Luncheon and the special 40th Celebration & Victory Party.This year’s Conference features condition-specific workshops and broader topics relevant to all attendees, including genetics, family planning, exercise and physical activity, and bone and joint health. Conference programming is in English; however, two workshops will be offered in Spanish on Saturday.
Typically, about half of Conference attendees are taking part for the first time. MacCarrick and Shalhub both encourage people who have never been to Conference to join the Foundation this July.
“Conference is really invaluable. I can guarantee there will be a new research topic, interaction where you learn from another family or individual, or a new piece of knowledge that will expand how you view, treat, or relate to your condition,” said MacCarrick.
“Please come! Also please know that Conference can be a bit overwhelming for newcomers. Feel all the emotions, take deep breaths and breaks when you need to, definitely go home and be exhausted afterwards, but know that the knowledge, connections and memories you make at Conference will sustain you and your family for years,” MacCarrick added.
Shalhub emphasized the benefits of community connections forged at Conference. “Come with curiosity and leave inspired. This Conference offers not only incredible learning opportunities but also a welcoming community where your voice matters. It’s the kind of experience that stays with you long after it ends,” said Shalhub.
For media inquiries, please email April Dawn Shinske at brandcomms@marfan.org
To learn more about Foundation events across divisions, visit marfan.org/calendar
April Dawn Shinske is the Chief Communications and Marketing Officer for The Marfan Foundation. She is proud to lead a stellar integrated marketing and communications team and honored to help tell the amazing stories of our community members.