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.
International Study Group Findings Suggest Prophylaxis Could Reduce Hospitalizations for VWD Patients. To read more, go to the Resource Room