Welcome! I am so excited that we are launching the VWDConnect.org website! I hope you find this site to be a place for connection; connection with each other, the bleeding disorder community and medical community. I like to think of this website as a “virtual conference”. At the first national Type 3 VWD conference in May 2017, the energy and power of the patients and families, faculty, national organization representatives and the staff being able to come together to share, support and educate was a very special experience. But since we all don’t live in the same hometown, I hope this can become your virtual conference when we can’t be together physically.
Our goal to keep the content fresh with current information on resources, Foundation news and research information and opportunities. We will be also adding a private, Community Member only chatroom later in 2018. The direction of the website will be developed with the Community Members’ input, so start thinking about what you would like to see on the website.
For now, please explore the site and let us know your thoughts. For those of you who are visiting and are unfamiliar with VWD Connect Foundation or Type 3 VWD, please let us know if you have any questions as you look around.
Until next post,
Co-Founder and President
VWD Connect Foundation
Dear fellow attendees,
On behalf of the VWD Connect Board and Staff, I would like to thank you for attending the conference and make it a big success! I hope you found the conference very informative and worth your time.
I am a member of the Foundation’s Tech Committee and also an attendee myself. This is my second year attending the conference and I felt it was very worthwhile; I met a lot of new families and also enjoyed the content from the new sessions. I am very appreciative that our feedback from last year didn’t go unnoticed and some of the new content and arrangements reflected that. I hope you made a lot of new friends and connections to share your ideas, information regarding the treatments and also share your emotions with someone who understand what we go through as a severe VWD family.
Finally, a huge thanks to Jeanette, Ed, the faculty and the staff. I am so grateful to Jeanette and Ed for their tireless work to make this event possible.
Please check back again soon for more pictures and posts from the conference.
International Study Group Findings Suggest Prophylaxis Could Reduce Hospitalizations for VWD Patients. To read more, go to the Resource Room
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!
Co-Founder and Board Member
VWD Connect Foundation
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!
Board Member, Patient Representative
VWD Connect Foundation
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!
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 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.
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.
Traveling with a bleeding disorder takes some planning! Check out National Hemophilia Foundation’s tips for travel.