MEDICAL CONFERENCE
Empowering and connecting XP patients, families, caregivers, and communities
Empowering and connecting XP patients, families, caregivers, and communities
Empowering and connecting XP patients, families, caregivers, and communities
XPFSG exists to help improve the quality of life for people with XP and other diagnosed UV light conditions. We strives to create awareness and educate the public about XP through hosting bi-annual XP Medical Conference and Kids camp.
Great Wolf Lodge; 7333 N Pima Rd, Scottsdale, AZ 85258
November 8th – 10th, 2024
December 14th, 2022 — The XP Family Support Group hosted an International XP Medical Conference at the Graduate Hotel in Minneapolis. The conference was a great success!
Speakers included medical doctors and research scientists from the University of Minnesota and the National Institute of Health, as well as presentations and discussions led by XP patients and their families. Kids partook in activities including jewelry-making, tie-dying, painting, a video game bus, a magic show, bowling, and the Minnesota Zoo! All families also had an excursion to the Mall of America.
Families came from as far as Australia, and as close as Minneapolis. The weekend ended with a wonderful farewell dinner which is always bittersweet for families as this conference is often the only time XP children are around others just like them.
Special Education Alphabet Soup – Click Here to Read
Neurology of XP – Click Here to Read
Gene Therapy for Xeroderma Pigmentosum Cockayne Syndrome (XP-CS) and XP- Neurological Disease(XP-ND) – Click Here to Read
Geroscience Aging XP and Potential Therapeutics – Click Here to Read
Endocrine Considerations in XP – Click Here to Read
PHYSICAL THERAPY FOR XP – Click Here to Read
Inclusion, Access, & Accommodations for Students with Disabilities/Disabled Students – Click Here to Read
Anti-Aging research at Scripps – Click Here to Read
Testing skin treatments in a mouse model of XP – Click Here to Read
UK National XP Service – Click Here to Read