Calendar

Featured Events

October 3-5

June 27-29

Photography and Presentation: Saturday June 29

DoubleTree by Hilton Hotel Bethesda – Washington DC

For more info.

What is Smith-Lemli-Opitz syndrome (SLOS)?

SLOS is a metabolic disorder caused by a mutation in the DHCR7 (7-dehydrocholesterol reductase) gene on chromosome 11. This gene codes for an enzyme that is involved in the production of cholesterol. People who have SLOS are unable to make enough cholesterol to support normal growth and development.

 

June 21-23

POSITIVE EXPOSURE Photography, workshop and presentation!

June 17

June 8

Family Conference @ Boston Children’s Hospital

CLOVES Syndrome stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis.  CLOVES is caused by a somatic genetic mutation in a gene called PIK3CA that increases the activity of the gene. CLOVES belongs to a category of diseases known as PIK3CA-overgrowth spectrum or PROS.

https://www.clovessyndrome.org

May 30 – June 2

Positive Exposure in Perth, Australia

A collaboration with the Wilhelm Foundation and individuals that are living with an undiagnosed condition.

The Undiagnosed-a-photo-project

Undiagnosed Disease Program (UDP)

Australia’s first Undiagnosed Diseases Program (UDP) is currently underway in Western Australia. The UDP-WA aims to provide a definitive diagnosis for people with complex and long-standing medical conditions.

Project Y, lead by Dr Gareth Baynam, is a groundbreaking initiative that brings together specialist doctors to provide an answer and a diagnosis to the thousands of families who desperately need them.

May 27 -29

POSITIVE EXPOSURE in Australia.

Presenting to Genetic Counselors at the Royal Melbourne Hospital.

Undergrads at the University of Melbourne in collaboration with Dr. Ingrid Winship

Photography with individuals living with Epidermolysis Bullosa and HHT ( Hereditary hemorrhagic telangiectastic)