by: Parent Project Muscular Dystrophy
Duchenne & Becker Adult Care & Transition Meeting Recap
Ahead of PPMD’s 2023 Annual Conference in June, around 40 healthcare professionals from around the country gathered for a one-day meeting to discuss an important topic in the Duchenne and Becker community: adult care.
Physicians, nurses, social workers, and therapists convened in Dallas, Texas, to discuss current transition to adult care models, barriers to access and resources, and ways in which PPMD can support enhancing overall care for adults with Duchenne and Becker. The meeting was filled with conversation around how current clinics can support their adult patients as well as better engage with adult specialists within their partnering institutions.
There was also a focus on the importance of discerning the successful transition to adulthood – through autonomy, independent decision-making, and independent living – from the transfer of care to adult care facilities, including how variable adult care teams can look depending on where an individual lives or receives care.
It’s clear there is a lack of sufficient support, resources, and quality care for adults in this community. As next steps, the PPMD team looks forward to engaging with more adult care providers and adult care-specific organizations from around the country in hopes to expand more Adult Certified Duchenne Care Centers, increase awareness and engagement with adult care providers, and ensure there is access to care for every individual living with Duchenne/Becker, no matter their age.
If you would like to speak with a member of PPMD’s Care team to help identify an adult provider near you, schedule a PPMD For You or email careteam@parentprojectmd.org
Catch up on what happened at PPMD’s 2023 Annual Conference
PPMD’s 2023 Annual Conference brought together our largest gathering of over 1,060 individuals from all around the world. The four-day meeting was filled with scientific presentations, discussions around care, clinical trials and quality of life, and of course, social events to bring the community together.
If you missed a session, or if you want to go back and take another listen to a favorite presentation, session recordings are now available!
