NCLRA

The Neuronal Ceroid Lipofuscinoses Research Alliance (NCLRA) is a united group of international foundations who's purpose is to aid in the coordination of bringing potential therapies to clinical trials for the three major forms of NCL (INCL, LINCL and JNCL). The JNCL Research Fund is associated with the NCLRA and play a very active role in the following.

Through this united effort we achieved the following:

	created a network of relevant research information
	combined our monetary resources, to achieve greater impact
	project one voice for all our children

In November 1999 the NCLRA organized an international conference with the following objectives:

	Determine the applicability of various therapeutic approaches
	establish a working relationship among the scientists and between the NCLRA
	determine the availability of reagents to study NCL
	gain better understanding of regulatory issues with regards to clinical trials for rare diseases
	identify the needs for the three major forms of NCL's and develop an action plan.

The document below is a combined proceedings, summary and recommendations.

November 99 "Action for Therapy" Conference

Proceedings	Summary and Recommendations

The document can be read in adobe acrobat. If you require acrobat reader click on acrobat icon.