Calendar

Featured Events

October 3-5

July 18

Photography, Thursday all day.

 

Click here for more conference information.

What is Sturge-Weber Syndrome?

Sturge-Weber Syndrome (SWS) (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder caused by the GNAQ gene mutation.  It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye, endocrine and organ irregularities, as well as developmental disabilities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees.

July 16

1st Year Medical Student Orientation + FRAME Workshop.

June 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 27

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 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)