To be completed by an active member
of the Organization
provide the following information so we can provide you with the most timely,
relevant services and programs possible, and to maintain current contact and
organization information. Information marked with an asterisk is
Statement: This information will be held
in utmost confidence and not be shared nor published without your consent.
of data: The data collected will be used to offer high impact, relevant
programs and services, and some information will be required for grant
eligibility. Information provided may be used in aggregate for periodic rare
disease landscape reporting.