Month: March 2018
Welcome from Ed!
It is my pleasure and an honor to invite you to the VWD Connect Foundation Inc. website. We are so excited to be launching this new website and with it holding the promise to provide you with education, resources, research information, conference and program opportunities and most of all a connection to each other. As we further develop the website, we believe it will become an amazing resource to you and your families in the arena of Type 3 VWD. One of the features I love most about our website is the opportunity to be involved in the direction of the foundation by expressing your needs, concerns and accomplishments. As one of your Executive Members of the Board of Directors and Co- Founder of VWD Connect Foundation Inc., a huge WELCOME!
Ed
Co-Founder and Board Member
VWD Connect Foundation
Welcome from Your Patient Board Representative
Hello Everyone! Welcome to our new VWD Connect website! Here you will find many helpful resources as well as a place to connect with others with Type 3 VWD. We are delighted to have this website where we can learn, share and grow together as a community.
Among the many exciting features that will be coming to website is a unique page where we can connect together. We look forward to hearing from you! Also, please be sure to check often as we will add new content regularly.
Again, a warm welcome!
Alice
Board Member, Patient Representative
VWD Connect Foundation
Are you a Community Member?
We want a loud voice for Type 3 VWD, so be sure to join us as a Community Member! Community Membership is free, and automatically makes you eligible to attend all VCF events and join in the planning and shaping of the Foundation. Check out our Membership page for all the info. And remember, if you attended the May 2017 Making the Connection Conference in Florida, you are automatically approved for Community Membership. All you need to do is let us know you want to become a Community Member and you are in!
Save the Date for the 2018 National Conference!
It’s happening again – VWD Connect Foundation announces the 2018 National Type 3 Von Willebrand Disease Conference, Making the Connection, June 22-25, 2018 in Palm Beach Gardens, FL.
Check out the details on the Events page. Hope to see you there!
Have an idea?
Have an idea for a way VCF can help? Let us know! This is YOUR Foundation, Community Members will shape and guide its future. But only if you tell us what will help. If you find a resource to help families living with Type 3 VWD, send it our way so we can share it on the website. Have an idea for an educational event? Let’s see if we can make it happen! Are you a fundraising guru? We could use your skills! Together we can make a difference in the lives of those living with Type 3 VWD.
HFA Meeting Anyone?
The Hemophilia Federation of America is holding their Annual Symposium in Cleveland, Ohio, April 26-29, 2018. VCF will be represented there, many of our board and faculty will be in attendance. What about you? If you are going to the HFA Annual Symposium, let us know. We will make sure we connect at the Symposium! For more information check out the HFA Annual Symposium.
Hitting the Road for Spring Break?
Traveling with a bleeding disorder takes some planning! Check out National Hemophilia Foundation’s tips for travel.
What’s Your Biggest Challenge?
If you ask me, it’s dealing with emergency rooms. The thought of having to go to an ER and explaining about VWD makes my skin crawl! What about you? If you had to pick from the following, which is the hardest to deal with having Type 3 VWD?
Emergency Rooms
Schools
Health Insurance
Intimate Relationships
Power in Numbers!
People with Type 3 VWD are an extremely small group, it is estimated that there are only 300-400 in the United States. So how can your voice be heard? How can your needs be known? VCF is here to help.
The community has noticed you! The conference in May 2017 has spurred great conversation about the challenges of Type 3 VWD and people are beginning to act. Research is being planned, organizations are reaching out to see how they can help and connections are growing.
Stay tuned for more to come!