Why patient conferences are important for people living with chronic conditions
Patient conferences are vital for people living with chronic conditions for several key reasons. These gatherings provide opportunities for education, community building, empowerment, and improved care & management, making a significant impact on the lives of those affected by long-term conditions and impairments. Here’s why patient conferences are so important:
Access to Education and Information
For individuals living with lifelong conditions like Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder, staying informed about the latest research, treatment options, and management strategies is crucial. Patient conferences offer a platform for:
Learning from experts: Medical professionals, researchers, and healthcare specialists often present at these conferences, sharing cutting-edge information that may not be easily accessible elsewhere. This helps patients stay up-to-date on new therapies, technologies, or research findings that could impact their care.
Learning from lived experience: Possibly equally important as learning from experts, learning from others who have the condition gives real-life examples of living with the condition.
Understanding the condition: Conferences often cover essential topics like the cause, progression, and impact of chronic conditions, giving attendees a deeper understanding of their condition and validation of their symptoms.
Connection to the Patient Community
Living with a chronic condition and disability can often feel isolating. Patient conferences provide an opportunity to meet others who are dealing with similar challenges. The sense of community built at these events is invaluable for several reasons:
Shared experiences: Connecting with others who truly understand the day-to-day struggles of living with a chronic condition or impairment can offer comfort and validation. Attendees can exchange personal stories, coping strategies, and emotional support. In the case of EDS & HSD, comparing mobility aids, helpful professionals names…. And zebra stripes.
Support networks: Conferences help foster relationships that extend beyond the event itself, often leading to lasting friendships or peer support groups that provide ongoing encouragement and advice. I am still in contact with friends I made at my first EDS Conference in Baltimore, USA, in 2010!
Empowerment Through Advocacy
Patient conferences often include workshops and discussions on self-advocacy and navigating healthcare & other systems, helping individuals feel more empowered in managing their condition. Attendees learn:
How to advocate for themselves: Whether it's speaking up about symptoms, requesting specific treatments, or seeking second opinions, patients gain practical skills to take charge of their condition management.
How to influence broader change: Many conferences also focus on advocacy at a systemic level, teaching participants how to get involved in raising awareness, influencing policy changes, or supporting research initiatives related to their condition.
Inspiration and Hope
Lifelong conditions like EDS & HSD can be overwhelming, especially when there are few (or no) treatment options or an accumulation of symptoms over time. Patient conferences often include inspiring speakers, such as patients who have overcome significant challenges or medical professionals working to improve outcomes. This can provide:
Renewed motivation: Hearing success stories (of living with EDS or HSD) and new developments in research can reinvigorate individuals who may be feeling discouraged or stuck in their journey.
A sense of progress: Even incremental progress in research or patient care can offer hope, showing that advancements are being made in understanding and treating the condition.
Patient-Centered Care and Collaboration
Conferences bring together patients, caregivers, healthcare providers, and researchers, fostering collaboration between these groups. For patients, this means:
A voice in their care: Attendees often have the opportunity to share their experiences and perspectives with medical professionals and researchers, contributing to a more patient-centred approach to care.
Opportunities for Caregivers and Families
Lifelong conditions affect not only the individual but also their family and caregivers. Patient conferences provide opportunities for caregivers to:
Gain valuable knowledge: Caregivers can learn how to better support their loved ones, including how to manage symptoms, navigate the healthcare system, and cope with the emotional toll of lifelong conditions and disability.
Find support for themselves: Just like patients, caregivers can connect with others in similar situations, helping them feel less isolated and better equipped to manage the challenges of caregiving.
Encouragement for Self-Management
Many conditions like EDS & HSD require lifelong management, and patient conferences help individuals learn how to take a proactive role in their care. This can include:
Learning self-management techniques: Sessions often include tips, tricks and hacks to help with symptom management.
Access to Multidisciplinary Perspectives
Conferences typically involve a range of professionals, including doctors, therapists, dietitians, psychologists, and researchers. This multidisciplinary approach allows attendees to gain:
A holistic understanding: By hearing from experts across different fields, patients can better understand how various aspects of wellbeing—physical, mental, emotional—interact in managing their condition.
Comprehensive care strategies: The integration of different viewpoints encourages a more comprehensive approach to treatment, often combining medical interventions with lifestyle changes, mental health support, and alternative therapies.
Patient conferences are a vital resource for individuals living with lifelong conditions such as EDS & HSD, offering education, emotional support, advocacy opportunities, and a chance to build lasting connections. These events help empower patients and caregivers with the tools, knowledge, and community they need to manage their condition more effectively, ultimately leading to better outcomes and a higher quality of life. Whether it's gaining new insights from experts, sharing experiences with peers, or discovering new resources, patient conferences provide hope and encouragement to those navigating the complexities of chronic conditions.
The Ehlers-Danlos Society Global Learning Conference is coming!
February 7-9, 2025 in Brisbane, QLD.
Registration Options:
▶️ General Admission Adult - USD$300
Ages 18 and over.
Ticket includes:
All sessions on February 7 and 8, 2025
Morning & afternoon refreshments and lunch on February 7 and 8
➡️ General Admission Age 18 and Under - USD$225
Must be accompanied by a parent or guardian over the age of 18. Please note that some main event presentations contain information that might not be suitable for those under 18; viewing is at the parent or guardians’ discretion.
Ticket includes:
All sessions on February 7 and 8, 2025
Morning & afternoon refreshments and lunch on February 7 and 8
*Photo ID may be requested at the registration desk.
⬆️ General Admission Carer - USD$225
Ages 18 and over. One Carer ticket available per full paying adult.
Ticket includes:
All sessions on February 7 and 8, 2025
Morning & afternoon refreshments and lunch on February 7 and 8
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VIRTUAL ATTENDANCE: USD$100
Ideal for attendees seeking the rare chance to ask questions live, network directly with experts and peers, and make the most of an interactive experience that cannot be replicated with recordings alone.
Ticket includes:
Real-Time Engagement: Live access to all sessions on February 7, 8 and 9 2025, hosted from Brisbane, Australia, with the opportunity to join interactive discussions, Q&As, and exclusive virtual roundtables.
Networking & Connections: Connect with fellow attendees, speakers, and vendors in real time through the Whova app - exchange digital business cards, and stay in touch through the app for three months post-event.
Exclusive Perks: Engage with sponsors, participate in contests, and enjoy discounts and offers from our virtual swag bag.
Enjoy live access to the workshops*, with the flexibility to attend up to three throughout the day as they are repeated. Any workshops you miss will be available as lifetime recordings for you to revisit at your convenience.
*Please note: Workshops will be streamed using a static camera. While every effort will be made to ensure clear audio and video, the setup and live streaming limitations may affect quality. Captions and translations will not be available for these sessions, and virtual participants will not be able to submit questions during the live workshops.
Extended Access: Lifetime on-demand access to session recordings, starting seven days after the event.
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On-Demand Recordings Pass - USD$50
Perfect for those unable to attend live due to time zone constraints. While this pass offers the full educational experience, it does not include the unique value of live engagement, networking, or real-time Q&As with presenters.
Ticket includes:
Lifetime Access to Session Recordings: Enjoy flexibility with on-demand access to event presentations, released seven days after the event.
Presentation Materials: Receive downloadable PDFs of event slides and resources.
* Every effort has been made to display the correct information. Please verify the information when purchasing your ticket via The Ehlers-Danlos Society