The World Parkinson Congress (WPC) is an international conference that takes place every three years and brings together researchers, clinicians, people with Parkinson’s disease (PD), care partners, and PD advocates to share information on the science of PD as well as the best clinical, wellness, and exercise practices to better the lives of people with PD. It is unusual for a conference to be geared toward both people with PD and medical professionals, which is one of the unique things about WPC.
The 7th WPC just took place at the end of May in Phoenix, Arizona, and was attended by more than 4,000 people! (You can start planning now to join us at the next WPC in Quebec City in 2029!)
APDA presented nine posters during these sessions, with each one highlighting a unique aspect of APDA’s research or program initiatives – and we want you to know about these initiatives as well. Each initiative is focused on a unique APDA program or resource that benefits the PD community.
Six Parkinson’s Initiatives We Presented at WPC 2026
Addressing Often Unspoken Topics
PD can affect much more than just movement. Changes in intimacy and relationships are common and can significantly impact quality of life, but unfortunately these topics are often overlooked or uncomfortable to discuss. In response to this important issue, APDA’s ParkinSex resource (a kit and booklet) was developed to help normalize these conversations and provide practical tools to help people and their partners living with PD find ways to reconnect and rebuild intimacy.
A brief survey was included in the ParkinSex kit to gather feedback on impact and foster improvement on future iterations of ParkinSex. The results presented at WPC showed high engagement and strong acceptance among its users. Approximately 75% reported that they would recommend ParkinSex and approximately 68% reported that ParkinSex helped them achieve their overall intimacy goals. Just earlier this year we launched a companion resource, ParkinSex: The Game – a simple card game meant to speak conversation and intimacy in a fun and low-pressure way.
Understanding How People Want to Learn
APDA conducts an annual Insights Survey to track educational needs and preferred methods of engagement within the PD community so that we can better serve people in ways that are most useful and impactful for them. The recent findings from 2022-2025 suggest that individuals and care partners are becoming more informed and engaged while continuing to prioritize topics such as:
The survey highlighted a lasting shift toward digital and hybrid learning (91-93% would likely continue to use). Some of the most valued resources for learning are webinars and other virtual programs. (Visit our Virtual Events Calendar to see what virtual programs we have in store for you.)
Interestingly, in 2025, fewer respondents (a decrease of 21%) reported needing additional information as compared with previous years, suggesting that educational resources are reaching more people that need them. There is still room for improvement however, as some individuals reported unanswered questions (12%) and limited access to movement disorder specialists (34%).
These findings continue to reinforce the importance of offering information through multiple channels and tailoring resources to specific community preferences to have the most impact. At APDA we are committed to reaching more people in more ways – whether through our in-person programs and classes, our virtual programs, our extensive website, social media updates, telephone helpline, and more — getting our programs and resources into the hands of as many people as possible is a priority.
Cultural Adaption Matters
APDA’s outreach efforts within Mandarin-speaking communities highlighted how cultural beliefs, caregiver roles, and preferred communication styles influence engagement. Typically, translating educational material is not enough to fully reach these communities. Effective outreach strategies require understanding how the community communicates, seeks healthcare information, and supports family members. APDA conducted focus groups within the Mandarin speaking community which demonstrated that effective components of engagement include:
- Community partnerships
- Visual storytelling
- Caregiver-centered approaches
- Acknowledgement of traditional health beliefs
APDA’s offerings of Chinese language materials have been accessed widely with:
- 1,300+ Mandarin video views
- 400+ digital downloads of Simplified Chinese material
- 1,100+ printed Simplified Chinese resources distributed
To view our resources in Simplified Chinese and Mandarin, please visit our Resource Library and select the “Simplified Chinese” filter. You can also reach out to us at apda@apdaparkinson.org and our staff can answer your questions in Simplified Chinese.
Bringing Research Closer to Patients
APDA’s resources in Florida include a vibrant APDA Florida Chapter as well as a Center for Advanced Research (CAR) at the Mayo Clinic, Jacksonville. Collaborative efforts between the two allow for direct interaction between researchers and the PD community.
To that end, the APDA Florida Chapter hosted research-focused community events featuring presentations from investigators at the Mayo Clinic–Jacksonville CAR. Researchers presented their work in accessible language, followed by a panel discussion and live Q&A session. Attendees completed post-event surveys evaluating clarity, accessibility, relevance, and engagement with the content.
The feedback from the attendees indicated a high satisfaction with the content (70% Excellent ratings for presentation and 74% Excellent ratings for Q&A). 100% of attendees expressing interest in attending future research-focused programs.
Post-event evaluations demonstrated strong performance on ease of understanding, new knowledge acquisition, real world applicability, relevance, and increased interest in clinical trials.
By bringing complicated and very scientific research to the PD community in an approachable and understandable way, it not only helps people learn more about the disease itself, but it helps them understand the hope and progress that is on the horizon.
Reducing Geographic Barriers to Parkinson’s Support & Resources
APDA works hard to provide help and support to as many people impacted by PD as possible. But access to specialized PD education and support can be particularly challenging for those living in rural communities as they often live very far from specialized medical care like a movement disorders specialist, they have internet connectivity issues, and more APDA conducted outreach initiatives in Iowa and Missouri to understand and address barriers such as:
- Travel burdens
- Shortages of neurologists
- Internet limitations
- Social isolation
APDA partnered with local organizations, libraries, extension schools, and community agencies to develop programs that bring education and support closer to where people live. The participants of this outreach initiative reported learning valuable information (100%) along with strong interest in continuing these programs (88% reporting they would attend a local support group). We will continue to find ways to reach more rural communities so they can feel connected and have access to the resources that they need.
Supporting People With Early Onset Parkinson’s
Young Onset Parkinson’s Disease (YOPD) presents unique challenges that can differ substantially from those of older adults. These challenges can include:
- Managing employment and career
- Complicated finances
- Parenting responsibilities
- Navigating dating and new relationships
In response, APDA’s Northwest Chapter implemented YOPD-CON, a two-day conference created by and for individuals with YOPD, held twice so far in 2023 and 2025. Pre and post evaluations indicated meaningful improvements in areas such as belonging, optimism, confidence, and preparedness. Between the 2023 and 2025 conference, registration rose from 113 to 229 individuals and in-person attendance also increase from 94 to 165.
These results suggest that tailored education and peer support programming can be essential to address the needs of specific PD communities. APDA offers a variety of resources specifically for the YOPD community including specialized support groups, educational programs, and more.
Building Support Around Real Lives
APDA is very proud of the unique programming taking place across the country to address the needs of people with PD. The posters presented by APDA at WPC not only illustrate many of these programs but also demonstrate the impact that these programs have on their participants.
The common themes that emerge from this work is that by understanding barriers, listening to communities, and adapting resources accordingly, we can best serve those who turn to us for support. By listening, refining, creatively problem solving, and more, we can provide the best support, education, and sense of community possible, which in turn helps the PD community live life to the fullest. We are here for everyone.
Tips & Takeaways
- APDA presented nine exciting and impactful projects via poster sessions at WPC 2026
- You can learn about other posters we presented at WPC about our unique research funding in a previous blog post
- Programming works best when tailored to individual needs
- Education must evolve with changing learning preferences
- Cultural adaption goes beyond translation
- Direct patient-researcher connections strengthen engagement
- Local partnerships can overcome geographic barriers
- People with Young Onset PD benefit from specific support and community
- Connection and community are important components of care for everyone impacted by PD
- If you are interested in supporting APDA’s programs and services, please consider making a donation today
This blog was written by Clark Jones, PhD, and was reviewed, edited, and approved by Dr. Rebecca Gilbert.