2018 NATIONAL TYPE 3 VWD CONFERENCE
2018 CONFERENCE REGISTRATION NOW OPEN!
To provide an opportunity for Type 3 VWD 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:
- Provide a 4-day, 3-night conference for patients and a guest with all expenses
- Gather faculty of healthcare providers specializing in bleeding disorders including physicians, nurses, physical therapists, social workers, geneticists and health educators.
- Educational content will consist of full assembly and small group presentations and discussions.
- Included among the medical educational topics will be: diagnosis, symptoms, treatment options, inhibitors, prophylaxis and joint health.
- Psychosocial topics will include: relationships, family challenges, emotional challenges of loss and depression, disclosure and positive coping strategies.
- Provide a safe and relaxed atmosphere conducive to making connections between attendees.
- 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
Travel arrangements for the Type 3 VWD patients and a guest will be provided to the conference, a hotel room and meals from June 22-25, 2018. The conference will be held at the PGA National Resort and Spa in Palm Beach Gardens, Florida. For more information about PGA National Resort, please visit: www.PGAResort.com
Resource materials will be provided to attendees throughout the conference. Spanish translation and mobility equipment will be available upon request. All hotel rooms will be furnished with refrigerators for medications.
NEW THIS YEAR
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
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 sponsor, has 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 sponsor 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.
- Registration is on-line. To register 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 the grant provider.
- 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, travel and any special needs requests. You will be contacted after registration about your arrangements, typically within 3 business days.
- Attendance is limited. Attendees will be accepted in the order in which they register. Once the conference is full, we will close registration but maintain a waiting list in the event we have cancellations. If you should need to cancel after acceptance, please notify us immediately so we may invite another attendee to fill your spot.
Patients registering may also register their guest at the same time. Please make sure you have necessary information from your guest for travel and hotel arrangements. This will include items such as exact legal name as it appears on I.D., date of birth, airline frequent flyer number if desired, contact information, special needs, etc. You may only register one guest. Exception: in the case of a patient under the age of 18, two adult caretakers may attend as guests staying in the same hotel room. If you feel you have a unique situation that requires an additional guest, or if the patient is under 18 years old and there will be two guests attending, please contact JCesta@VWDConnect.org to discuss. An authorization must be granted to enable you to register an additional guest. Exceptions will be made on a very limited need basis.
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 VWD do you want our medical experts to answer?
- What is your biggest challenge living with Type 3 VWD?
Please take time to consider these questions so we can make this conference more meaningful for you.
To register go to: 2018 Type 3 VWD Conference
If you have any questions, please contact:
Jeanette Cesta, Executive Director
VWD Connect Foundation Inc.
Ed Kuebler, Executive Director
VWD Connect Foundation Inc.
Octapharma is the exclusive sponsor of this conference. To maintain patient confidentiality Octapharma will be onsite at select times and have agreed to a code participation throughout the conference.