Key Topics on the Agenda for Virtual XLH Week

Key Topics on the Agenda for Virtual XLH Week
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The Virtual XLH Week 2020, a series of online events bringing together people with X-linked hypophosphatemia (XLH), their families, caregivers, and healthcare professionals, is open for registration.

Organized by the XLH Network, the virtual week will run Oct. 3–10. Those wishing to take part need to register here and pay a fee of $25, which includes access for an entire household for the whole week, an app, an event T-shirt, and a swag bag (gifts).

The Virtual XLH Week includes more than 12 sessions focusing on important topics for XLH patients and caregivers.

Mutations in a gene called PHEX are the cause of XLH, a disease characterized by low levels of phosphate in the blood. Phosphorus is a key mineral for the development and growth of bones and teeth. It also plays a role in regulating the normal function of cells and is key for cell structure.

Dental care is one focus of the online event. Teeth problems are common among people with XLH, with children being prone to tooth abscesses. Adult patients also are prone to tooth infections and may develop periodontitis (a gum disease).

What the future holds for research into XLH and physical therapy also will be a topic. During a panel discussion participants will discuss the challenges of coping with XLH, focusing on mental health.

A session dedicated to support caregivers’ needs and challenges will be led by Cristol O’Laughlin, the founder and CEO of the Angel Aid Cares, a non-profit organization offering relief services to caregivers through health and wellness training, retreats, and a global mother-to-mother network.

Virtual Week also will include testimonies of Pete Dankelson from PetesDiary.com. Pete has been diagnosed with the rare disease Goldenhar syndrome, and will talk about the power of motivation.

Kyle Bryant and Sean Baumstark, diagnosed with Friedreich’s ataxia and  authors of the podcast Two Disabled Dudes, also will lead one the virtual sessions.

Nicole Boice, founder of Global Genes — a non-profit advocacy organization for people diagnosed with rare and genetic diseases — will lead a session titled “The Rare Journey – It’s What Unites Us.”

During the week, participants will be able to join the “Break with Yoga Stretch.” A “Kids Talent Showcase” is scheduled for Oct. 3

Patricia holds her Ph.D. in Cell Biology from University Nova de Lisboa, and has served as an author on several research projects and fellowships, as well as major grant applications for European Agencies. She also served as a PhD student research assistant in the Laboratory of Doctor David A. Fidock, Department of Microbiology & Immunology, Columbia University, New York.
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José holds a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.

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Patricia holds her Ph.D. in Cell Biology from University Nova de Lisboa, and has served as an author on several research projects and fellowships, as well as major grant applications for European Agencies. She also served as a PhD student research assistant in the Laboratory of Doctor David A. Fidock, Department of Microbiology & Immunology, Columbia University, New York.
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