PLEASE READ – IMPORTANT INFORMATION: CSL Behring and Ferring Pharmaceuticals have announced a recall of lots of Stimate®.
In order to keep you informed of recalls of products that you or your families may use, we are sharing a communication received by CSL Behring concerning a widespread Stimate recall along with a Medical Advisory issued by the National Hemophilia Foundation (NHF). If Stimate is part of your treatment plan, please contact your medical team for further discussion regarding your individual care.
Statement from CSL Behring:
Ferring Pharmaceuticals, Inc., is initiating a precautionary voluntary recall of all batches of Stimate® Nasal Spray (desmopressin acetate) 1.5 mg/mL. During routine testing, a low volume was observed and the analysis of the solution from this sample generated an out-of-specification result. Stimate® is owned and manufactured by Ferring Pharmaceuticals, Inc., and distributed and sold by CSL Behring LLC. CSL Behring has proactively notified the distributors, specialty pharmacies, impacted HCPs, and advocacy partners regarding this situation.
Our commitment to patient care continues to be a key priority and guiding principle for CSL Behring. We will keep the community apprised of the situation so that therapy management decisions can be made from an informed position. We encourage patients to contact their pharmacy regarding their individual prescription and, if necessary, contact their physician about their treatment plan.
We have been sharing with you information concerning the new VWD Guidelines that have been under development for the last two years. Now they are open for public comment through May 15, 2020. Click here to read the proposed guidelines and learn how to share your comments.
Our annual National Type 3/Severe Von Willebrand Disease Conference scheduled for June 26-29, 2020 has been put on the back-burner for now as we plan to re-engineer it as a multi-day “virtual” event for late fall. More information will follow as we combine people, platforms and technologies to help us deliver general sessions, breakout rooms, medical presentations, small group meetings and yes, even entertainment! …..so stay tuned!
Leading up to the Conference we thought it was essential to find ways to stay connected and engaged as a community; especially through the ongoing challenges posed by the COVID-19 Virus. Our response is the launch of our Staying Connected Initiative.
The Foundation will be hosting a virtual 5-week series of social, educational and support sessions using the popular and user-friendly platform ZOOM. Our first event, “An Evening with the Foundation” will take place Saturday, April 18th at 7:00 pm EST.
Foundation members have already been sent an email regarding how to become involved in the Staying Connected Initiative. If you are not currently a member but would like to join or learn more, please contact: Jeanette Cesta at JCesta@VWDConnect.org
Step Up Reach Out (SURO) is an international leadership advocacy program designed to develop and
train young adults in the bleeding disorders community globally who want to
step up and help to promote better care and services in their communities.
The program application is open to males 21 yrs to 25 yrs with a bleeding disorder.
We are now accepting new applications for the SURO 2020. The deadline is January 25, 2020 for applications.
For more information and to apply please visit:
We now have definite dates!
The 4th Annual VWD Connect Foundation National Type 3/Severe VWD Conference
will be held June 26-29, 2020 at the PGA National Resort & Spa in Palm Beach Gardens , Florida.
Once again, thanks to PGA National Resort & Spa for supporting the Foundation
More details to follow!
National Hemophilia Foundation’s Annual Meeting is in Califoria October 3rd and VWD Connect will be there! If you are going to be there also, let us know – call or email – and we’ll plan a time to connect.
Thank you to all our faculty, staff, sponsors and attendees! Hope to see you and many new faces in 2020!
Here’s a look at Saturday’s breakout sessions…
| All About Insurance
Come discuss the latest in health insurance issues with community experts.
The thought of learning to infuse or helping your young child navigate through infusing and be overwhelming. Come meet with experienced nurses to discuss the basics in infusing. Ask questions, learn techniques and tricks. There will be no live infusing, but supplies will be available for demonstration and discussion.
| Medical Aging Issues
Aging brings new challenges, especially with severe VWD. Come discuss how to handle natural aging changes with the added concern of severe VWD. Learn about managing common health events along with your bleeding disorder.
|The Science Behind Genetics
The genetics of VWD is complex! Dig in with top specialists in the field to increase your understanding of VWD genetics and inheritance.
|Pain, Anxiety and Depression
Do we experience Pain, Anxiety and Depression individually or are they each part of a whole and inter-connected? Join us as we explore the common association of pain, anxiety and depression with chronic disease and discover new coping skills.
Smile! A bleeding disorder doesn’t have to stop you from taking good care of your teeth. Come discuss dental issues with a dentist experienced in working with the bleeding disorder community.
|Women’s Health – Minus the Periods!
Come discuss all things concerning reproductive bleeding – except the period. In this breakout we’ll address pregnancy, menopause, and general good practices for women’s reproductive health.
As always, we greatly appreciate your steadfast support.
If you would like to learn more about Octapharma and their products, please visit:
We are happy that you will be joining us at the 2019 National Conference and appreciate your support.
If you would like to know more about Takeda and their products, please visit:
If you are a member of the Foundation you should have received an email with a username and password today, April 16th. If you did not receive it, or if you would like to become a member and apply for the conference please email Jeanette Cesta at JCesta@VWDConnect.org
Global Blood Disorder Foundation Inc (GBDF), who partnered with our Type 3 VWD Conference in 2017, is accepting applications for their 2019-2020 International AFFIRM Leadership Program. AFFIRM is an acronym for A Fellowship For Integrating Responsible Mentors.
AFFIRM 2019-2020 applications are open to people ages 26-38 years old with a bleeding disorder (men and women).
The website for and criteria for applying is http://www.globalblooddf.org/
The deadline for applications is January 25th, 2019.
What a wonderful night of dining, dancing and entertainment! We thank all who attended and all our donors. Looking forward to the 2019 2nd Crystal Ball!
We are so excited that tickets are now on sale for The First Annual VWD Connect Foundation Crystal Ball. Click here for more information and to buy your tickets.
We are excited to announce the first VWD Connect Foundation Crystal Ball to benefit VWD Connect Foundation. It will be a glittering evening filled with food, drink, dancing and unique auction items. We have reserved a block of rooms at The PGA National Resort and Spa for our out of town guests at a reduced rate. Tickets will go on sale early October, check back to purchase tickets soon!
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.
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?
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!