1 ORGS · 16 ACTIVITIES · 1 STATES ← back to explorer ·
specific activity group

CFC Syndrome Research & Registry

Advances understanding and clinical management of Cardio-Facio-Cutaneous (CFC) syndrome through patient registry development, funded research, and expert consensus guidelines.

what makes this distinct Focuses specifically on a rare genetic disorder (CFC syndrome), combining patient data aggregation, targeted research funding, and clinical guideline development—distinct from broader medical research initiatives that may not integrate all three components for a single ultra-rare condition.

1
organizations
16
activities
0
nested groups
2
strategies
coverage AZ 1
NTEE codes
B99
organizations

1 orgs in this activity group

Every organization with primary activities in CFC Syndrome Research & Registry or any of the groups nested inside it. Click a column header to sort. Filter by name or state above the table.

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1CARDIO-FACIO-CUTANEOUS INTERNATIONAL
Nonprofit organization supporting individuals and families affected by Cardio-Facio-Cutaneous (CFC) syndrome, a rare genetic disorder. Provides family support,…
AZ$146K16
approaches

strategies used in this activity group

Approaches extracted from orgs working in this activity group and the groups nested inside it. Click any to see the full set of orgs running the same approach.