On July 23 and 24, the World Congress on xeroderma pigmentosum will take place in Poughkeepsie, New York at the Grand Hotel. Patients with xeroderma pigmentosum (XP) cannot be exposed to sunlight without suffering severe skin damage. The following is an interview with Caren Mahar, president of the Xeroderma Pigmentosum Society, about this special event.
What is the goal of the World Congress on xeroderma pigmentosum?
The World Congress was developed as the first opportunity for many families of patients with this rare disease to meet with many of the specialists associated with the diagnosis, treatment, and research for xeroderma pigmentosum. For thirteen years we have held a summer night camp program for patients with XP and related sun sensitivity conditions and bring two or three specialists in for each session of Camp Sundown. But never before have all the specialists been together to speak to family members, patients, caregivers, and the interested community. Not only will we all be guaranteed to learn something new, as a parent of a child with XP, I hope to leave the symposium encouraged by the research efforts and opportunities for a cure.
Who will be attending the event?
The event is open to patients with XP (and other related conditions), their families, caregivers, medical students, and interested community members.
Can medical or pre-med students attend? What about individuals not in the medical field but maybe interested in advocacy?
Absolutely! Continuing Medical Education credits are available for students and professionals and we have people who are coming just because they want to know more about XP. This short conference should answer anyone and everyone's questions on anything they ever wanted to know about xeroderma pigmentosum and how to better care for someone afflicted with a UV-related disease.
What is the contact information for someone interested in attending this event?
For more information or to register, please contact the XP Society at [email protected] or call 518-851-2612.