Hermansky-Pudlak Syndrome Network Inc

The HPS Network partnered with the National Organization for Albinism and Hypopigmentation (NOAH) to man a booth at the national meeting of the American Academy of Pediatrics, held Oct. 17 – 19, 2009 in Washington DC.

The booth not only promoted awareness of NOAH and of albinism among pediatricians; it also encouraged pediatricians to screen their patients with albinism for Hermansky-Pudlak Syndrome.

“Early diagnosis is important,” said Heather Kirkwood, Vice President of the HPS Network, “Parents who know their child has HPS are better prepared in an emergency and can be better advocates for their child’s needs.”

The booth was manned by volunteers from both NOAH and the HPS Network.

NOAH volunteers included: Susan DuBios, Liz O’Dell, Maureen Schofield and Chris Myers.

HPS Network volunteers included: Hilda Cardona, Gina Danzinger and Heather Kirkwood.