2022 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.

Conference Details:

A hotel room and meals will be provided for the Type 3/Severe VWD patients and a guest from June 24-27, 2022. The patient and their guest are fully responsible for their own transportation arrangements and costs to and from West Palm Beach Marriott, 1001 Okeechobee Blvd, West Palm Beach, Florida.

The hotel is located approximately 2 miles from the Palm Beach International Airport (PBI) and provides a complimentary shuttle service to/from the hotel. To help in planning your arrival/departure times, Friday’s activities begin with small discussion groups at 4:00 PM followed by Welcome Dinner at 6:30 PM. Sessions will end on Monday at 1:00 PM followed by a Farewell Lunch.

Should an attendee wish to stay additional nights, we have a group rate of $149/per night available for direct booking with the hotel. The group rate is valid for rooms booked before June 4, 2022. If parking is needed at the venue, we have a limited number of parking passes available for our attendees.

If a patient wishes to bring additional guests beyond the one guest allowed there is a registration fee of $600 to cover the additional meals and expenses. A patient has the option of having the additional guest(s) stay with them in their room provided by the Foundation, or the additional guest(s) may book another room at the group rate of $149 with the hotel directly.

For more information about West Palm Beach Marriott, please visit: West Palm Beach Marriott

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.

COVID 19 Policies:

Due to the pandemic, the following policies are in place for the in-person Conference:

1. At a minimum, the Foundation will follow CDC guidelines in place at the time of the Conference, including for the wearing of masks, social distancing, and other applicable protocols.

2. All attendees must abide by the West Palm Beach Marriott’s policies at the time of the Conference. For Marriott’s current COVID-related policies, please visit https://clean.marriott.com/

3. All staff, faculty and sponsor attendees must be fully vaccinated. The Foundation reserves the right to require vaccination for attendees.

4. The Foundation recommends that attendees test themselves for COVID prior to traveling to the Conference. If any attendee tests positive, do not travel. The Foundation reserves the right to require testing prior to travel or upon arrival depending on the circumstances at the time of the Conference.

5. During the Conference, do not participate in the sessions and activities if you do not feel well or have COVID symptoms (i.e., fever, cough, congestion).

6. Attendees who arrive at the Conference positive, or test positive during the Conference, will not be allowed to participate in the Conference and will be fully responsible for any expenses related to quarantine/isolation. These expenses may include additional hotel nights and meals outside of the Conference dates, along with any change in travel costs incurred. Consider purchasing travel insurance with your flight.

7. The Foundation has contracted with the West Palm Beach Marriott that any individual needing to stay longer due to COVID will be allowed to use the group rate of $149/night, subject to room availability, until they are able to travel.

Final policies regarding testing, masks, vaccinations, and protocols for those recently exposed to a person testing positive for COVID, etc. will be issued prior to the Conference once determined in conjunction with the Board and faculty.

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.

Registration and Information:

Registration will open in April. All patient members will receive an email with the link to register.
If you are a Type 3/Severe VWD patient and not yet a member of VWD Connect Foundation, please contact Jeanette Cesta, Executive Director, to inquire about joining the conference.
Jeanette Cesta
JCesta@VWDConnect.org
561-373-3889

Patient Registration:

• The Registration Application is on-line.
• 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. Once you have completed your travel arrangements please email you flight information or if driving, your anticipated arrival/departure day and times to: Admin@VWDConnect.org.

Guest Registration:

Each patient may invite one guest to share their room and attend the conference. 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.

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.

If a patient wishes to bring additional guests beyond the one guest allowed there is a registration fee of $600 to cover the additional meals and expenses. A patient has the option of having the additional guest(s) stay with them in their room provided by the Foundation, or the additional guest(s) may book another room at the group rate of $149 with the hotel directly.

If you have any questions, please contact:
Jeanette Cesta, Executive Director
VWD Connect Foundation Inc.
JCesta@VWDConnect.org
561-373-3889

2022 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.

Conference Details:

A hotel room and meals will be provided for the Type 3/Severe VWD patients and a guest from June 24-27, 2022. The patient and their guest are fully responsible for their own transportation arrangements and costs to and from West Palm Beach Marriott, 1001 Okeechobee Blvd, West Palm Beach, Florida.

The hotel is located approximately 2 miles from the Palm Beach International Airport (PBI) and provides a complimentary shuttle service to/from the hotel. To help in planning your arrival/departure times, Friday’s activities begin with small discussion groups at 4:00 PM followed by Welcome Dinner at 6:30 PM. Sessions will end on Monday at 1:00 PM followed by a Farewell Lunch.

Should an attendee wish to stay additional nights, we have a group rate of $149/per night available for direct booking with the hotel. The group rate is valid for rooms booked before June 4, 2022. If parking is needed at the venue, we have a limited number of parking passes available for our attendees.

If a patient wishes to bring additional guests beyond the one guest allowed there is a registration fee of $600 to cover the additional meals and expenses. A patient has the option of having the additional guest(s) stay with them in their room provided by the Foundation, or the additional guest(s) may book another room at the group rate of $149 with the hotel directly.

For more information about West Palm Beach Marriott, please visit: West Palm Beach Marriott

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.

COVID 19 Policies:

Due to the pandemic, the following policies are in place for the in-person Conference:

1. At a minimum, the Foundation will follow CDC guidelines in place at the time of the Conference, including for the wearing of masks, social distancing, and other applicable protocols.

2. All attendees must abide by the West Palm Beach Marriott’s policies at the time of the Conference. For Marriott’s current COVID-related policies, please visit https://clean.marriott.com/

3. All staff, faculty and sponsor attendees must be fully vaccinated. The Foundation reserves the right to require vaccination for attendees.

4. The Foundation recommends that attendees test themselves for COVID prior to traveling to the Conference. If any attendee tests positive, do not travel. The Foundation reserves the right to require testing prior to travel or upon arrival depending on the circumstances at the time of the Conference.

5. During the Conference, do not participate in the sessions and activities if you do not feel well or have COVID symptoms (i.e., fever, cough, congestion).

6. Attendees who arrive at the Conference positive, or test positive during the Conference, will not be allowed to participate in the Conference and will be fully responsible for any expenses related to quarantine/isolation. These expenses may include additional hotel nights and meals outside of the Conference dates, along with any change in travel costs incurred. Consider purchasing travel insurance with your flight.

7. The Foundation has contracted with the West Palm Beach Marriott that any individual needing to stay longer due to COVID will be allowed to use the group rate of $149/night, subject to room availability, until they are able to travel.

Final policies regarding testing, masks, vaccinations, and protocols for those recently exposed to a person testing positive for COVID, etc. will be issued prior to the Conference once determined in conjunction with the Board and faculty.

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.

Registration and Information:

Registration will open in April. All patient members will receive an email with the link to register.
If you are a Type 3/Severe VWD patient and not yet a member of VWD Connect Foundation, please contact Jeanette Cesta, Executive Director, to inquire about joining the conference.
Jeanette Cesta
JCesta@VWDConnect.org
561-373-3889

Patient Registration:

• The Registration Application is on-line.
• 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. Once you have completed your travel arrangements please email you flight information or if driving, your anticipated arrival/departure day and times to: Admin@VWDConnect.org.

Guest Registration:

Each patient may invite one guest to share their room and attend the conference. 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.

If a patient wishes to bring additional guests beyond the one guest allowed there is a registration fee of $600 to cover the additional meals and expenses. A patient has the option of having the additional guest(s) stay with them in their room provided by the Foundation, or the additional guest(s) may book another room at the group rate of $149 with the hotel directly.

If you have any questions, please contact:
Jeanette Cesta, Executive Director
VWD Connect Foundation Inc.
JCesta@VWDConnect.org
561-373-3889

A HUGE thank you to our Platinum Sponsors, CSL Behring and Takeda for their generous support.

Please click on the logos below to visit our Sponsors’ websites.

A HUGE thank you to our Platinum Sponsors, CSL Behring and Takeda for their generous support.

Please click on the logos below to visit our Sponsors’ websites.