Carmen Camacho, a board member of the HPS Network, and Yara Nunez gave a presentation about Hermansky-Pudlak Syndrome at a meeting of the Massachusetts Commission for the Blind in honor of Rare Disease Day.
Counselors at agencies serving the blind and visually impaired are in a unique position to encounter people with this syndrome, many of whom may have never heard about HPS. Left untreated, HPS could affect one’s ability to achieve vocational goals.
The duo presented about the syndrome, their personal experiences, and the HPS Network’s “Presentation in a Bag,” a tool to empower members to educate their communities about HPS.
“Presentation in a Bag” includes a ready-made PowerPoint, large print note cards, brochures and a reporting sheet to share information with the Network for possible future grants.
The training for “Presentation in a Bag” takes less than an hour and can be done at the HPS Conference, or via appointment online.