Tag: sanfilippo for children

A total of 2 posts are filed under sanfilippo for children
Logan Pacl, Living with Sanfilippo Syndrome
My son, Logan, has Sanfilippo syndrome, a rare disease that could take his life before he turns 20. Logan loves playing at the park and… Continue Reading
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point,… Continue Reading
be-a-guest-blogger

Follow us on Twitter

Upcoming Events

Sep 14

RARE Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

RARE Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

RARE Patient Advocacy Summit

September 15 @ 8:00 am - 4:30 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 5:00 pm - 9:30 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

RARE Day of Beauty

September 16 @ 12:00 pm - 5:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm