WFH International Congress - Vancouver, Canada- 21st May 2006
II° Steering Committee meeting -Rare Bleeding Disorders (RBDs) SSC ISTH working group

Room number : Room 15 on Sunday, May 21 from 1-4:00 pm

Introduction:
State of the art of the RBDs project: Flora Peyvandi, Italy

I: National and International Registries (100 min)

	National databases listed in WFH: Paula Bolton-Maggs, UK (15 minutes)
	Swiss Registry: Philippe De Moerloose, Switzerland (10 minutes)
	The progress of work to develop a single North American Registry: Amy Shapiro, USA (10 minutes)
	UK National database and patient consent issue: Paula Bolton-Maggs, UK (10 minutes)
	French Data Jean DONADIEU (10 min.)
	Egyptian National Registry and condition of other EMBRO countries: Magdy El Ekiaby, Egypt (10 minutes)
	Iranian registry: Manijheh Lak and Mehran Karimi, Iran (10 minutes)
	Indian Registry: Alok Srivastava, India (10 minutes)

Discussion: How to link these registries? (15 minutes)

II: Housing and funding (35 min)

	Housing of RBDD: How ISTH side could support this registry? Uri Selighson, Israel (10 minutes)
	Funding raising: identification of potential granting sources - objectives for the project: Amy Shapiro, USA (15 minutes)
	Access and applicants security using RBDD, Marzia Menegatti, Italy (10 min.)

III: Development of subcommittees for each disease (20 min): Discussion

	Afibrinogenemia
	FII, FVII and FX
	FV and FV+FVIII
	FXI
	FXIII: SSC FXIII group?
	Other type of deficiencies? As Plasminogen deficiency

Conclusion and future plan (10 min)

All discussed topics are reported in the minute