Connective Issues Fall 2024

STATS 1,700+ registrants from 56 countries

CONDITION CONNECTION

Marfan 48%

LDS 19%

VEDS 12%

Other Condition 6%

Medical Professional 6%

Igniting Connections Virtually Virtual Conference kicked o ff with speaker Melissa Flint, PsyD, FT, CCPT, who set the tone for the week focusing on mental and physical well-being, setting expectations, and making connections. She encouraged attendees to view the event as “a chance to meet people from all over the world in this format, that I would never otherwise get connected with.” Attendees like Luke, Marta, and Grace and Tammy from the United States did just that. “It has been so nice to have the opportunity to learn from some of the best experts out there, and to meet people who have been on similar medical journeys too,” Luke said. “At a time when it has been increasingly di ffi cult to fi nd that sense of community, it is so nice to see…such an accessible, supportive, and well-delivered programme.” “It’s good when we hear other people telling their stories because - what they’ve learned, what they’ve been through, how they manage to overcome the issues - it makes me feel not so alone because I don’t know anyone else with LDS here in Portugal,” Marta said. Grace and Tammy attended LDS Connect, a Loeys-Dietz support group, o ff ered during Virtual Conference. After introductions, they realized they both lived in upstate South Carolina. After connecting through social media, and only a few short weeks after Virtual Conference, they arranged to meet for lunch with more meetings in the works. “The virtual conference was free and easy to attend, and it was great to meet some folks at LDS Connect,” said Grace. “Tammy is the fi rst person with LDS that I have met in person other than my family members. It’s really nice to connect with someone that knows the big and small challenges of living with LDS and even better to have that person be local, so we can share info and resources about care in our area and also bond over things that are completely non-LDS related too!” “The sessions were so informative, but it was truly fantastic to connect with other people with connective tissue [conditions],” said Tammy. “It is easy to feel isolated when you are diagnosed with a rare condition. It feels good to connect with someone with shared experiences related to LDS. Makes you know you are not alone.”  Grace Schwartz and Tammy Asplund connected during Conference and met in person afterward.

Other 9%

Attendee Breakdown • Adults 91%

• Teens 5% • Child 4% Geography • Highest state in US represented: CA

• 47 US states • 56 countries (US highest, followed by Canada, United Kingdom, and Australia) Top reasons why people registered: • Find answers to medical question • Learn ways to improve their mental health/ quality of life • Connect with others

Watch Virtual Conference Session Recordings The medical and mental health sessions can be viewed on our YouTube channel. Be sure to subscribe to get the latest educational videos.

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Fall 2024