Community. Support. Knowledge. These are the things families and professionals worldwide seek – especially when faced with a rare disease like Duchenne. That’s why, in partnership with Duchenne Hungary, CureDuchenne held the very first Duchenne conference in Hungary along with the Pediatric Rehabilitation Department of the Új Szent János Hospital and Clinic on Sept 16, 2022. Sponsored by Sarepta and the Healing Goodwill Foundation for families living with Duchenne and the healthcare providers who care for them, CureDuchenne’s trip to the Hungarian Conference included a visit to Új Szent János Hospital and Clinic. Jennifer Wallace Valdes, PT and Doug Levine, PT spent an entire day learning about the challenges this local facility has in treating Duchenne, and emphasized collaboration between hospitals and local professionals to help maintain long-term standards of care.
Sharing wisdom across the globe
The two goals of the conference were to reach out to families who are spread across the country with little or no interaction with healthcare providers, and to train regional physiotherapists so they can provide the best care. Conference topics included standards of care, clinical trials, physical therapy, and home care including stretching and nutrition.
The event was a resounding success, with more than 110 in attendance, including 80 professionals. CureDuchenne founders Paul and Debra Miller, and their son Hawken, shared their own personal story and met with families in private to discuss their individual journeys with Duchenne. Thanks to Agnes and Adrienn, the thoughtful conference planners who put this event in motion, CureDuchenne enjoyed an organized, thorough, and informative conference that brought people together for one cause: to improve care for people living with Duchenne.
How did the conference come about?
Conference hosts Agnes and Adrienn live in Hungary and are mothers of boys with Duchenne. Like many others in the Duchenne community, they went online seeking answers for their sons. On Facebook, the two realized their sons were close in age, amenable to skipping exon 51, and quickly exchanged phone numbers. They discovered CureDuchenne’s online resources for managing challenges at home along with the professional certification program for physical and occupational therapists. These two moms invited CureDuchenne to share information and resources with the Hungarian Duchenne community, and the first Duchenne conference was born.
Roughly 300 individuals in Hungary are living with Duchenne. Although there are neuromuscular hospitals to treat individuals with Duchenne in the capital city of Budapest, and Hungary has a single-payer healthcare system, there are fewer resources in rural areas for rare diseases like Duchenne. CureDuchenne’s certified physical therapist program is well-suited to share best practices among treating physicians so that medical professionals can stay abreast of the latest and best care techniques and more people living with Duchenne can benefit from improved care.
Looking to the future
This isn’t the first time CureDuchenne has crossed the globe to share insights and best standards of care with the global community. CureDuchenne representatives have visited Moscow and Canada to host conferences for families and medical professionals, and professionals around the world access CureDuchenne’s online professional training resources. But the success of this event in particular could prove a model for future trips abroad and an inflection point for building greater relationships with the global Duchenne community. CureDuchenne looks forward to further building and maintaining connections in Hungary and continuing to support therapists and families around the world.