Fall  2019 - Learn, Integrate, Collaborate

Educating Providers.  Changing Lives.
Live Webinar: Connective Tissue Disorders and Ehlers-Danlos Syndrome

 When:    November 15,  2019
 Time:     12:00 - 1:00 PM EDT
 Faculty:   Dr. Pamela Trapane and Dr. Sarah O'Brien


This state-of-the-science Webinar will explore the care of women and girls with connective tissue disorders, including a special focus on Ehlers-Danlos Syndrome.  The faculty will address specific issues and needs that individuals with connective tissue disorders may have; the medical and treatment strategies that are in use and recommended; and  the necessary collaboration between disciplines for effective management and treatment.

Our Webinars are free and open to all healthcare providers. 
 
September 15-17, 2019
Kansas City, MO

FWGBD recently hosted the Education & Clinic of Excellence Workshop convenings for  our two Learning Acti on Networks (LANs) for  Women/Girls with Bleeding Disorders and Sickle Cell Disease
in Kansas City,  MO, from September 15-17, 2019 The LAN meetings p rovided attendees with an outstanding educational experience that examined the latest clinical advances in females with bleeding disorders and with sickle cell disease and explored the critical elements of Clinics of Excellence. We were pleased to have record attendance for both meetings: the WGBD LAN meeting drew 100+ attendees, and the WGSCD LAN meeting attracted 35.

The LAN meetings are designed to harness the power of collaboration among healthcare providers, spread practical implementation of best practices, and connect participants to national initiative activities and resources - all with the aim of achieving bold improvements in the quality of care for females with bleeding disorders and sickle cell disease.

For more information on the WGBD or WGSCD Learning Action Networks, please contact Kimberly Roque at kroque@fwgbd.org. 
FWGBD Announces Second 
2019 Research Fellowship 
Award Opportunity

Promoting XXcellence in Women's Health: 
Optimal Management of Women and Girls with 
Bleeding Disorders 

Applications are being accepted now through November 1, 2019, for a special one-year award to support research on women and girls with bleeding disorders by new fellows or faculty.  For more information on criteria, timeline, and  application process
 visit our website. 

New Resources 

Faculty: Dr. Barbara Konkle and Dr. Joshua Safer 
Moderator: Kimberly Roque 
2019 SCDAA National Convention
Fertility Preservation for Women with SCD

Are you planning to attend the 2019 SCDAA convention in Baltimore, Maryland in October? Please join us for FWGBD's session on Friday, October 11, from 10:30-11:30 am.  Kristin Paulyson Nu ├▒ez, MS, CGC, Senior Genetic Counselor at Duke University, will provide insight on fertility preservation for women with sickle cell disease.  
Meet Us at ASH
December 7-10, 2019: Orlando, FL

If you will be attending the ASH 61st Annual Meeting in Orlando from December 7-10, FWGBD will be at Booth #2118, so please stop by and say hello! 
Participate in Peer Research Studies

I. LNgIUD in Patients with HMB: Research Study
 
A l lis o W h e eler,  M . D ., f r o m t h e  D i v is i o n  o f H e m a t o l o g y O n c o l o g y at Va nd erb i lt U n iv e rs i t y Sc h oo o M ed i ci n e, Cla udia B or zutzk yM . D., f r ot hDivisi oof A d ole scent  Med i ci ne at C hil dren's H osp ital  L os A ngel es CHL A, and Oluyemisi Adeyemi, M.D., f r ot hDepa r t ment  of O bst etrics a nd G ynec o l o gat B a yl or C ollege  oMed ici ne are leading a sur vey on health care pr o vi ders' att itu des a npract ices regarding using le v o n or ges t re l-releasing intra ut eri nd e vice ( L NgIU D) in ap pr o pri a te ca ndi dat ewith  H MB (heavy menstrual bleeding), i ncl udi ng adolesc e nt girls. C urre n tly there is  no s ta n dard pro t o c ol regar di ng pr e - med ic ati o n, in sert i on a nd p ost p r oced ure practi ces for  L NgI Ua mo ng spr o vi ders who p r o vi de ca rto th is special  p o pulat i o n. It is their goal  to e ventu al ly p r o duce a u nif orm ap p r oach  t hat  may  i m pr o vqual ity  of care in  pati e nts with Bleeding Disorders who cho ose t hL NgI Uto c o n tr ol H M B

Participants are still needed to complete this online survey. If yo v o l un t e er t o partic i p ate in th i s s t ud y y o u a r e fr e t s kip  qu es t i on s that d o n o h a v e a s t e ri s ks  b y th e m , o r d i s c o n ti nu e the s u r v ey at a n y t i m e . The su rv ey  w ill take approximately   1 0 - 1 m i nu t e s t c o m p le te .

  
        II. Survey on Animation in Primary Hemostasis for Hematology Courses
Many of you may know Evelyn Lockhart, MD, a current FWGBD MAC member and former FWGBD board member. In addition to her role as Clinical Associate Professor of Pathology, University of New Mexico Health Science Center, Dr. Lockhart is a Master of Science in Biomedical Communication candidate at the University of Toronto. For her master's program, Dr. Lockhart is developing an animation on primary hemostasis to use in medical school hematology courses. As part of that work, she is trying understand the learning objectives that are most important for medical students. If you work with medical students, please provide your insight by completing a very short survey that will take no more than 5 minutes. Dr. Lockhart may be reached via email for additional questions.
 
         III.   Hydroxyurea Exposure Limiting Pregnancy and Follow-up Lactation                                             (HELPFUL) Research Study
HELPFUL (ClinicalTrials.gov NCT04093986) is a new research project to identify women with sickle cell disease who have had hydroxyurea exposure during pregnancy and lactation. Both healthcare providers and female patients can enroll to share their experiences. There is a central REDCap database that allows data entry and provides an e-consent option. The database is now 'live' and we need to get the word out, so please consider participating in and sharing the following details. If you would like the IRB approval so other sites do not need their own local approval, please contact Kim Roque.
 
Also, if a medical team wants to provide documents on a mother with hydroxyurea exposure during gestation and lactation, healthcare providers may submit this information here:
 
Should mothers with sickle cell disease want to submit their experiences with hydroxyurea during pregnancy or breastfeeding, mothers may submit information here:

NHLBI's 2019 Annual Sickle Cell Research Meeting

FWGBD recently hosted an afternoon symposium as part of the NHLBI's 2019 Annual Sickle Cell Disease Research Meeting on August 27, 2019, in Bethesda, MD. Faculty included Andra James, M.D.; Russell Ware, M.D., Ph.D.;  Bimpe Adesina, M.D.; Kelly Acharya, M.D.; and Kristin Paulyson Nunez, M.S., CGC. A special thanks to our terrific faculty. Thanks to their efforts, FWGBD has already been invited to develop another program for the 2020 meeting.