Discussion Forums
Sat, 04/03/2010 - 18:21
The Joubert Syndrome and Related Disorders Foundation is expanding:)
We are an international organization serving people with:
- COACH Syndrome
- Cogan-type Oculomotor Apraxia (OMA)
Joubert Syndrome
Senior-Løken Syndrome
Dekaban-Arima syndrome
Varadi-Papp syndrome
Juvenile Nephronophthisis
Bardet-Biedle
Meckle-Gruber - Leber congenital amarousis,
- Usher,
- Jeune,
- Alstrom,
- Polycystic Kidney Disease
- Oral-Facial-Digital Syndrome Type I,
- Ellis-van Creveld,
- McKusick-Kaufman syndrome,
- von Hippel-Lindau,
- Primary ciliary dyskinesia/Kartagener
We offer a website; Yahoo!Group support site; Facebook group; quarterly newsletter and biennial conference. The next conference will be in July, 2011 in Orlando, Florida at the Orlando DoubleTree on International Drive. Room rates are only $92/night.
There will also be a two-day Scientific Symposium adjacent to the family conference.
Please check us out:)
www.jsrdf.org
Karen Tompkins
President: JSRDFOundation
ktompkins@jsrdf.org
