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Support group for Spanish-speaking parents of kids with Hermansky-Pudlak Syndrome

The HPS Network will be partnering with the Jewish Guild for the Blind to offer a conference call support group for Spanish speaking parents of kids with Hermansky-Pudlak Syndrome. Here's the info:

Estimados Padres de Ninos con HPS,

Nos gustaria informale de un estupendo servicio que sera ofrecido por la Red de personas con Hermansky-Pudlak Syndrome (HPS) en cooperacion con La Red Nacional de Apoyo Telefonico del Jewish Guild for the Blind para Padres de Ninos con Impedimentos Visuales con esta condicion.

El Guild conduce grupos de apoyo telefonico, de forma gratuita, para padres de ninos con problemas visuales a escala nacional. El Guild esta de acuerdo en patrocinar un grupo para padres de ninos con Hermansky-Pudlak Syndrome en espanol. El grupo sera facilitado por una trabajadora social del Guild que habla espanol, Awilda Jackanin, tambien vamos a tener disponible un miembro del consejo de la Red HPS. Al principio, el grupo se unira mensual (por telefono) llamando a un numero de telefono gratuito en todo el pais incluso Puerto Rico.

Adicionalmente proveyendo apoyo a los padres, se invitara expertos incluso medicos con conocimientos en HPS que llamaran para contestar preguntas de los participantes.

El Jewish Guild esta muy entusiasmado con este nuevo programa y estamos seguro que este servicio le ayudera a muchas personas que tienen ninos con esta condicion. Si le gustaria participar, se puede comunicar con Awilda Jackanin a liljack@nyc.rr.com o a Donna Appell a dappell@hpsnetwork.org o por telefono a 1-800-789-9HPS. Al Guild le dara mucho gusto poder participar con ustedes en este nuevo programa.

Sinceramente,

Awilda Jackanin, LCSW
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