MEMBERSHIP

VWD Connect Foundation Inc. Community Membership is open to patients diagnosed with severe Von Willebrand Disease. As a Community Member, you will have access to certain levels of information and activities. To become a Community Member, you need to register with the Foundation. Please contact:

Jeanette Cesta

Jeanette Cesta

Executive Director
jcesta@vwdconnect.org
561-373-3889

Ed Kuebler

Ed Kuebler

Executive Director
ekuebler@vwdconnect.org
832-423-5231

Upon receipt of your request, we will assist you in getting registered. Community Members may choose to opt out at any time by emailing either of the above people with your request.

Community Membership in the Foundation includes:

ACCESS

Ability to participate in surveys concerning the challenges of living with severe Von Willebrand Disease and the future direction of the Foundation’s activities

CONNECTION

Qualification for the Making the Connection Conference

INTERACTION

Access to private patient chat rooms/blogs on www.VWDConnect.org once available

EXPOSURE

Information on research opportunities

REGIONAL EVENTS

Qualification for regional conferences, workshops and programs

OPPORTUNITY

Opportunity to get involved in the Foundation on volunteer committees

Criteria for Community Membership in the VWD Connect Foundation Inc.:

A patient with severe VWD as determined by lab results of Von Willebrand Factor Antigen of <10%
–or–
A written statement of diagnosis of Type 3 Von Willebrand Disease from a physician on medical facility letterhead which includes patient name, diagnosis and date of birth and physician name, medical facility and contact information.
A parent of a minor patient (under the age of 18 years old) with the above documentation.

A primary concern for the Foundation is the safety and privacy of our Community Members. We will not share your information unless it is necessary in the execution of Foundation activities. Additionally, to ensure your private information is protected, we have established the following guidelines:

Exclusion to Community Membership:
Patient or patient with a family member who is employed by or is a representative under contractual agreement with industry and or home care companies.
Family relationships are defined as:
A primary caretaker/parent of a minor child with severe VWD.
A primary caretaker/parent of an adult child (over the age of 18 years old) with severe VWD who is financially dependent on a caretaker. Dependency is determined by financial support, providing insurance, primary residence (regardless if the patient is away at school) or tax return dependent status.
A patient’s spouse or significant other residing in the same household.
Any person living in the patient’s household.

If you have any questions or concerns about Community Membership eligibility, please don’t hesitate to contact us. This policy will be reviewed annually, and current Community Members’ thoughts will be given serious consideration.