Hemophilia of North Carolina

Since 1977, serving the people of North Carolina
affected by bleeding disorders.

260 Town Hall Dr., Suite A, Morrisville, NC 27560
919-319-0014
HNC Virtual Adult Retreat

HNC Virtual Adult Retreat

Friday, June 5, 2020 – Monday, June 8, 2020

VIRTUAL EVENT

This event is over.


We are all staying home in this unprecedented time of social distancing amid COVID-19. But that doesn’t mean that we can’t connect! Hemophilia of North Carolina (HNC) invites you to the 2020 Adult Retreat, to be held in the comfort of your home. Though we can’t get together in the mountains as originally planned, we can still meet virtually for connection, support, and education. Join us from June 5-8.

The Adult Retreat is open to all adults in the North Carolina bleeding disorders community, including men and women with a bleeding disorder along with partners or spouses, and parents of a child with a bleeding disorder. The agenda for the weekend is provided below.

There will be prize drawings at the end of each session, as well as prize drawings for visiting with the event sponsors, and for those participants who attend all sessions. HNC will also be able to reimburse each participant for dinner on Friday, lunch on Saturday, lunch on Sunday, and dinner on Monday, for a maximum of $40 total per person for all meals. Details on reimbursement will be sent with the confirmation email.

Sessions will be held through the Zoom platform. Once you register, you will receive information, including links to join the Zoom sessions throughout the weekend. If you have any questions about using Zoom, please let us know.

We hope that you will join us for the opportunity to connect with the bleeding disorders community.

Please register by Wednesday, June 3, 2020. If you have any questions, contact the HNC Office at events@hemophilia-nc.org, or by phone at 919-319-0014.

Agenda (Subject to Change)

Receive a $5 Amazon gift card for each session you attend. If you attend all sessions, you will receive a $50 Amazon gift card.

Friday, June 5

7:00pm-8:00pmSession 1: Meet & Greet and Trivia

Bring your favorite beverage and check in with HNC and say “hi.” Find out about what to expect over the next few days.

Saturday, June 6

9:45am-10:00am – Check-in

10:00am-10:30am – Opening remarks and introductions

10:30am-11:30amSession 2: Nurturing Couple Relationships – Dave Robinson, PhD, HFA

Learn how to make your relationship a priority while dealing with the stress of managing your own, your child’s, or your spouse/partner’s bleeding disorder.

11:30am-12:30pmSession 3: Sponsor Open House

Visit with the pharmaceutical and specialty pharmacies that are supporting the Adult Retreat.

1:30pm-2:30pmSession 4: Breakout Sessions – pick one

• Power of Empowerment – Tanya Stephenson, Sanofi Genzyme

Discuss ways of becoming empowered by acknowledging strengths, embracing individuality, creating safe environments, enhancing confidence, and establishing supportive partnerships.

OR

• Expecting the Unexpected, Betsy Koval, Takeda

Bleeding disorders can impact how you respond to emergencies, such as accidents, trauma, or natural disasters. This program will help you to develop an emergency plan right for you.

2:45pm-3:30pmSession 5: Fitness, Johnathan Blake, HFA

Participants will reap the benefits of a 45-minute bodyweight workout that will help to improve balance, increase mobility, build core strength, and lay the foundation for a healthy mind, body, and spirit. All fitness levels and abilities welcome!

Sunday, June 7

9:30am-9:45am – Check-in

9:45am-10:45amSession 6: Breakout Sessions – pick one

• Blood Brotherhood (for adult men) – Pain Matters, Jennifer Maahs, RN-BC, MSN, PNP – Novo Nordisk

Pain can affect everyday life for people with hemophilia. Learn about pain management options and tools to help talk about pain with health care providers.

OR

• Partner/Spouses/Caregivers – Roundtable Networking

Get to know other spouses of someone with a bleeding disorder and share tips and stories about your experiences.

OR

• SOAR (for women and girls) – How to Talk to Your Doctor: Find Your Voice – Christie Van Horne

Through this interactive storytelling session, we use practical strategies to identify essential medical information to share with doctors and your medical team.

10:45am-11:45amSession 7: Sponsor Open House

11:45am-12:15pmSession 8: Exploring Emotional Well-Being – Jeffery McFall, Pfizer Hemophilia

An overview of how mental health disorders impact the bleeding disorders community, what sign/symptoms to look for, and how to encourage dialogue with caregivers and health care providers.

1:30pm-2:30pmSession 9: Gene Therapy Research: Understanding the Science – BioMarin

Learn about the science of gene therapy. There are currently thousands of gene therapy trials around the country for a variety of rare diseases, including hemophilia. Come away with a better understanding of the technology that is used in gene therapy.

Monday, June 8

6:30pm-6:45pm – Check-in

6:45pm-7:45pmSession 10: COVID-19 and The Bleeding Disorders Community: What You Need to Know, Alice Ma, MD, UNC Chapel Hill; Guy Young, MD, Children's Hospital of Los Angeles

Learn about how the COVID-19 pandemic affects the bleeding disorders community and participate in a Q&A.

7:45pm-8:00pm – Closing Remarks & Prize Drawings

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HNC Hemophilia of North Carolina 260 Town Hall Dr., Suite A, Morrisville, NC 27560 — 919-319-0014 Hemophilia of North Carolina is a 501(c)(3) non-profit organization.
All donations are tax-deductible.
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https://hemophilia-nc.org/AdultPrograms/AdultRetreat-2020/index.php
 This page was last modified on Wednesday, June 3rd, 2020.