2019 NATIONAL  TYPE 3/SEVERE VWD CONFERENCE

Conference Mission

To provide an opportunity for Type 3/Severe Von Willebrand Disease patients and a guest to enhance their connection with other patients, care providers, the bleeding disorder community and the community at large.

To accomplish this mission we will:

  1. Provide hotel accommodations and meals for a 4-day, 3-night conference for patients and a guest.
  2. Gather faculty of healthcare providers specializing in bleeding disorders including physicians, nurses, physical therapists, social workers, geneticists and health educators.
  3. Educational content will consist of full assembly and small group presentations and discussions.
  4. Included among the medical educational topics will be: diagnosis, symptoms, treatment options, inhibitors, prophylaxis and joint health.
  5. Psychosocial topics will include: relationships, family challenges, emotional challenges of loss and depression, disclosure and positive coping strategies.
  6. Provide a safe and relaxed atmosphere conducive to making connections between attendees.
  7. Utilize anonymous audience response system in the full assembly sessions to encourage audience participation and discussion. This system will provide immediate feedback for attendees and presenters to make the content most relevant to the attendees’ needs and assess the comprehension of the information being shared.

Scope of the Conference

A hotel room and meals will be provided for the Type 3/Severe VWD patients and a guest from June 28-July 1, 2019. The patient and their guest are fully responsible for their own transportation arrangements and costs to and from PGA National Resort & Spa, Palm Beach Gardens, Florida, the conference venue.

For more information about PGA National Resort, please visit: www.PGAResort.com

When completing your registration application, you will be asked if providing your own transportation will be a financial burden that will prohibit you from attending the conference. We have funds available for a limited number of travel grants. Priority will be given to first time attendees. You will be notified by April 30, 2019 whether we will be able to provide your transportation.

Resource materials will be provided to attendees throughout the conference. Mobility equipment will be available upon request. All hotel rooms will be furnished with refrigerators for medications and a limited number of ADA rooms will be available upon request.

REGISTRATION INFORMATION

To improve the registration experience, all patients eligible to attend the conference will be given a user name and password that will be needed to begin registration. If you do not have a user name/password, please contact

Jeanette Cesta
JCesta@VWDConnect.org
561-373-3889

Attendee Conflict of Interest Statement

To ensure that the conference is safe from business solicitation (direct marketing of any kind, business discussions, etc.) and is enjoyable and stress free, we ask all patients and guests to abide by the following:

Patients and guests who are or have an immediate family member who is employed by or is a representative under contractual agreement with industry or home care companies are not eligible to attend this conference.

Our funding sponsors have also agreed to these conditions and will not have any employees or representatives under contract attending the conference as a patient or guest. The funding sponsors will have a table with information outside the conference room. That is the only place questions regarding business can be discussed and must be initiated by the patient/guest.

If at any time a conference attendee feels uncomfortable with any other attendees on-site engaging in inappropriate business conversations about their products or services, please contact a staff or conference organizer immediately.

By applying to attend this conference and submitting a registration you are confirming that neither the patient, guest or immediate family member of the patient/guest is an employee or contractual representative of an industry or home care company.

If you have any questions concerning a conflict of interest, please contact JCesta@VWDConnect.org for clarification.

Patient Registration

  • The Registration Application is on-line. To apply for this conference please make sure you have received an assigned user name/password.
  • All information provided during registration will remain confidential and will not be shared with any agencies outside of the conference function. Registration information will not be shared with any grant providers.
  • Appropriate non-disclosure agreements have been signed with outside vendors handling confidential/medical information including provisions for its destruction following the conference.
  • Registration information will include accommodations and any special needs requests. You will be contacted by April 30, 2019 if your registration application has been accepted.
  • Attendance is limited. First time attendees will be given priority. Once we have notified attendees about their application decision on April 30th, a self-pay option will be available. A self-pay patient (and their guest) will be responsible for their travel and hotel accommodations and a $500 registration fee offset meals and other expenses.

Any self-pay attendee, whether a patient or guest, must abide by the same conference guidelines as any other patient or guest.

  • If you have been notified that you are accepted into the conference and/or will receive a travel grant, and find you cannot attend, please notify us immediately so we may invite another attendee to fill your spot.

Guest Registration

Patients applying to the conference should also register their guest at the same time. Please make sure you have necessary information from your guest for regarding contact and hotel arrangements. This will include items such as exact legal name as it appears on I.D., date of birth, contact information, special needs, etc. You may only register one guest. Exception: in the case of a patient under the age of 12, two adult caretakers may attend as guests staying in the same hotel room.

All guests of Type 3/Severe VWD patients must:
1. Be at least 12 years old
2. Be involved in the care of the Patient
3. Attend all educational sessions and participate in the full conference activities.

Additional Registration Details

To better prepare educational content for the conference, we will be asking two questions at registration:

  • What one question about Type 3/Severe VWD do you want our medical experts to answer?
  • What is your biggest challenge living with Type 3/Severe VWD?

Please take time to consider these questions so we can make this conference more meaningful for you.

If you have any questions, please contact:

Jeanette Cesta, Executive Director
VWD Connect Foundation Inc.
JCesta@VWDConnect.org
561-373-3889

or

Ed Kuebler, Executive Director
VWD Connect Foundation Inc.
EKuebler@VWDConnect.org

Website: www.VWDConnect.org

This conference made possible in part through a grant from Octapharma.
Our sincere thanks to the PGA National Resort & Spa for their generous support.

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