Winter 2009 Newsletter

The NNPDF Winter 2009 newsletter is now available here, and the CCNNPDF special insert is here.

[Dec 15, 2009]

NPD Poster Now Available in Spanish

Please click here for a printable color poster about Niemann-Pick Disease, translated into Spanish.

[Nov 4, 2009 mem]

A Commitment to Persevere

Niemann-Pick Foundation Board Meeting Held

Board Meeting Press Release

Regions of Canada are adopting strategies for reimbursing medicinal products for rare diseases
 
The province of Alberta, Canada, last month announced a programme for rare disease pharmaceutical products. The Alberta Rare Diseases Drug Program is a new initiative that will reimburse Alberta residents for their rare disease treatments. The scheme requires users to pay premiums and “make co-payments consistent with their government-sponsored drug coverage”. The diseases currently eligible for coverage include Gaucher disease, Fabry Disease, MPS-I (Hurler/Hurler Scheie), Hunter syndrome and Pompe disease – all of which have treatments costing between C$250,000 - C$1million (€156,440 - €625,600) per year. The programme is expected to get underway in April 2009.

020109 ~ nmh

Contacts:

CCNNPDF (Canadian Chapter National Niemann-Pick Disease Foundation)
c/o Tammy Vaughan, Chair
RR #1; 443053 McCormick Side Rd.
Durham, Ontario  N0G 1R0
tammyv@butterball.ca

NNPDF (National Niemann-Pick Disease Foundation)

Nadine Hill, Director of Family Services

P.O. Box 49; 401 Madison Ave, Suite B

Fort Atkinson, WI  53538

920-563-0930
nnpdf@idcnet.com