Resources

Department of Behavioral Health and Developmental Services website:

Community Services Board (CSB) Contact Information:
CSBs help people in Virginia with mental health, intellectual disability, and/or substance-use disorder needs. CSBs provide pre-admission screening services 24-hours per day, 7 days per week. 

• • CSB Contact Information

Mental Health 

• Mental Health America of Virginia Warm Line
• Virginia Organization of Consumers Asserting Leadership (VOCAL)
• NAMI Virginia

Developmental Disabilities:

• If immediate help is needed for an adult with developmental disabilities, please click here for contact information for the DBHDS REACH crisis services program.

Suicide:

• Call or text the 988 Suicide and Crisis Lifeline at 988.
• If you are trying to reach a 988 call center in Virginia using an out-of-state area code, you can call 703-752-5263. These resources are available 24 hours a day, 7 days a week.

Mental Health Coalition’s Resource Library

The Mental Health Coalition’s Resource Library is made available by an alliance of mental health organizations. We encourage you to browse this database to learn about mental health, help a loved one, learn coping skills and seek support. For immediate support 24/7, reach out to Crisis Text Line by texting COALITION to 741741, or call the 988 Suicide & Crisis Lifeline at 988. It’s free and highly confidential, unless it’s essential to contact emergency services to keep you or your friend safe. In an emergency call 911.

Mental Health Resource List From the National Bleeding Disorders Foundation

Go here for a list for individuals and families affected by bleeding disorders who are interested in exploring mental health support and resources. If you or someone you care about is experiencing an immediate crisis or having thoughts of self-harm or harming others, then seek immediate assistance by calling 9-1-1, calling 9-8-8 (Suicide & Crisis Lifeline), calling your healthcare provider, or going to the nearest emergency department.

Mental Health Resource List From the Hemophilia Foundation of America

Go here for a robust list of mental health resources ranges from hotlines and text lines, self-care, and resources to identify warning signs that indicate someone is in crisis, common warning signs of suicide, and what to do or say if someone is in crisis/at risk of suicide.

Bleeding Disorders Substance Use & Mental Health Access Coalition

BD SUMHAC is a national coalition made up of members from the National Bleeding Disorders Foundation, the Hemophilia Federation of America, HTC providers, chapter staff, and community members from around the country with a mission to advocate for access to appropriate substance use and mental health treatment facilities for all individuals with bleeding disorders.

BD SUMHAC has developed a toolkit for your HTC or other medical providers that can be used if you are in need of inpatient or residential substance use or mental health treatment, and is in the process of developing a toolkit for patients with bleeding disorders.

If you have been denied access to inpatient or residential substance use or mental health treatment facilities, please contact Kate Bazinsky, BD SUMHAC chair.

If you have signs and symptoms of a bleeding disorder, please talk with a health care professional. Bleeding disorders can be dangerous if they are not treated. WPGGM with untreated bleeding disorders face serious risks after childbirth, dental surgery, other surgery, or injury.

Many WPGGM start by seeing one of the health care professionals listed below. Depending on your health insurance coverage, you may need a referral, if you have questions contact your insurance plan for specifics and/or go here to learn more about navigating the healthcare system.

Hematologist A hematologist is a physician who treats diseases and disorders of the blood. Many hematologists who specialize specifically in bleeding disorders work at Hemophilia Treatment Centers (HTCs). To find an HTC that offers specific services for WPGGM with bleeding disorders go here.

HTCs in Virginia with specific programs for WPGGM

Children’s Hospital of the King’s Daughters (CHKD) Menorrhagia Program, Multidisciplinary Clinic of Adolescent Gynecology and Hematology at CHKD. New patients must be under 18, if 18-21 they can be referred for a bleeding disorder work up, but Gynecology doesn’t take new adult patients. For patients with diagnosed bleeding disorders having issues related to menorrhagia and are interested in hormonal management. Patients with thrombophilia /sickle cell/ long term anti-coagulation therapy with heavy periods. Patients with menorrhagia whose PCP or GYN is concerned may have a bleeding disorder. Patients who end up in the ED/admitted for severe iron deficiency anemia related to heavy periods. Clinic Phone Number: 757-668-7243

University of Virginia ABCD clinic (Adolescents with Bleeding and Clotting Disorders) Multidisciplinary Clinic of Adolescent Gynecology and Hematology. For anyone under the age of 18 years old with concern for heavy bleeding and/or anemia resulting from menstrual bleeding (as well as possible other factors). Also, anyone under 18 years of age who desires hormonal therapy but has a history of blood clots or family history of blood clots. Clinic Phone Number: 434-924-8499

OB/GYN (obstetrician/gynecologist) focus on women’s reproductive and sexual health and are a good source of information around symptoms such as heavy periods.

Primary Care Physician/Pediatrician A PCP (primary care physician) provides preventive care and basic diagnoses of common illnesses and medical conditions. For children and teens, the equivalent would be a pediatrician.

Healthcare providers and/or student health services on campus If you are currently enrolled in college/university most campuses have a health center that can assist you in determining options.

The VA Bleeding Disorder Program (VBDP) convened a workgroup consisting of VBDP team members, HTC social workers, and chapter representatives to create a statewide resource guide for accessing period care products.

The term “Period Poverty” is defined as inadequate access to menstrual (period) hygiene tools and education, including but not limited to sanitary products, washing facilities and waste management. A 2021 study conducted by U by Kotex® revealed that 40% of respondents struggled to purchase period products and showed an increase from the initial survey conducted in 2018.

As a result of increased awareness of this issue, several community resources have been developed to help address the issue of affordable access to period supplies. The VBDP workgroup has compiled a statewide resource guide with information about resources and support available. To view this new resource, please visit: Virginia Period Resource Guide

Asistencia para elcuidadomenstrual (elperiodo) en Virginia 

To learn more about this issue, including advocacy efforts and other ways to help, visit: Alliance for Period Supplies

*VABDF is following the lead of the National Bleeding Disorders Foundation (NBDF) who uses the term Women, Girls, and People who have or had the Potential to Menstruate (WGPPM) to be inclusive of the needs and experiences of gender diverse people who were assigned female at birth, and those who now identify as a woman or a girl. While the term WGPPM is framed around menstruation, not all currently menstruate. Regardless of gender identity, some people have had hysterectomies, others have their periods suppressed or ended from hormone therapy, and others have gone through menopause. It is the “potential” that is the unifying element in this term, as some may never have started their periods in the first place. In addition, NBDF acknowledges that bleeding for WGPPM is not just about heavy menstrual bleeding. Addressing other types of bleeding is critical for overall improved health outcomes.

**Please note the risk assessment tools are in no way a substitute for a diagnosis from a qualified medical provider, and the information on this site is provided for your general information only (please see NBDF’s full Medical Disclaimer.)

According to the CDC Bleeding Disorders in Women page, in the US, as many as 1% of WGPPM have a bleeding disorder, and many are unaware of their condition. Some examples of bleeding disorders include inherited platelet disorders,  von Willebrand disease, hemophilia, and other factor deficiencies. It is important that tweens and teens learn the signs of a bleeding disorder, feel empowered to talk to a trusted adult if they suspect that they might have one, and work with a doctor to find out what is causing their symptoms. Here are some resources to help get you started:

• Hemophilia Federation of America (HFA) – Menstruation Tracking Tools
• NBDF Time to Talk Puberty: A Guide for girls with bleeding disorders
• NBDF Time to Talk Puberty: A Guide for girls with bleeding disorders, Tips for Parents and Caregivers
• NBDF It’s Your Health. Own It. Period: Know how long is too long for your period. Know if it maybe due to a bleeding disorder so you can start to feel better. It’s Better You Know.
• NBDF Victory for Women Resource Page
• NBDF Steps For Living: Girls

In collaboration with Hemophilia of Georgia (HoG), the FWGBD worked with medical providers, to develop the following resources for patients to address heavy menstrual bleeding.

• About Your Period
• Period FAQ | Periodo Preguntas Frecuentes
• Heavy Menstrual Bleeding | Sangrado Menstrual Abundante 
• Iron Deficiency Anemia | Anemia por Deficiencia de Hierro
• Menstrual Product Options | Opciones de Productos Menstruales

FWGBD, 7-2-1: All you need to know about periods, a conversation-style podcast that answers the most pressing questions about periods and heavy menstrual bleeding.

FWGBD & HoG – For Girls with Bleeding Disorders: What to Expect During Your First Gynecological Exam | Para niñas con trastornos hemorrágicos (sangrado): ¿Qué esperar durante tu primer examen ginecológico?

Once you have determined that you may have signs and symptoms of a bleeding disorder, setting up an appointment with a health care provider, getting prepared for your first appointment, and finding community resources can help you feel more comfortable and assist you in receiving the proper diagnosis. Here are some resources to help get you started.

• Believe Limited Documentary: Dismissed tells the stories of women with hemophilia who have been ignored, misdiagnosed, or left untreated for generations. At its center is 15-year-old Isabelle, a rare case who received early care and now advocates for others. 
• Centers for Disease Control and Prevention (CDC) – Bleeding Disorders in Women
• Foundation for Women and Girls with Blood Disorders (FWGBD)
• Hemophilia Federation of America (HFA) – Blood Sisterhood
• HFA Blood Sisterhood – Resource List
• Hemophilia of Georgia (HoG) – The Hemophilia, von Willebrand Disease, & Platelet Disorders Handbook
• Let’s Talk Period – Website that aims to increase awareness of the signs and symptoms of bleeding disorders 
• NBDF Better You Know – How to Prepare
• NBDF Better You Know – Healthcare Diary
• NBDF Better You Know – Your Guide to Lab Tests, Screening Tools and Health Exams 
• NBDF Better You Know – Lab Test Log
• NBDF Better You Know – What’s A Normal Period
• NBDF Victory for Women
• National Outreach for von Willebrand (NOW) Conference
• Office on Women’s Health (OASH) – Bleeding Disorders
• Ready.Set.Flow  – What’s A Normal Period

• • Emergency Guidelines Form Hemophilia A
  • Emergency Guidelines Form Hemophilia A with Inhibitor (taking Hemlibra)
  • Emergency Guidelines Form Hemophilia A without Inhibitor (taking Hemlibra)
  • Emergency Guidelines Form Hemophilia B
  • Emergency Guidelines Form Von Willebrand Disease (Factor)
  • Emergency Guidelines Form Von Willebrand Disease (DDAVP)

  Information on emergency department visits and how to make a plan: National Bleeding Disorders Foundation Health Equity Toolkit

  Go here to find the National Bleeding Disorders Foundation’s (NBDF’S) Nursing Working Group Emergency Alert Card Templates

• Ask the Nurse: Navigating Procedures Safely with a Bleeding Disorder – Jenna Richard, Senior RN – Central Virginia Center for Coagulation Disorders at VCU
• Letter to Dental Health Professional (form to share your diagnosis with your dentist)
• NBDF Steps for Living Dental Care
  • Birth – 8 years
  • 9 – 15 years
  • 16 – 25 years
  • Adults
• World Federation of Hemophilia (WFH) Guidelines for Dental Treatment of Patients with Inherited Bleeding Disorders

Resources for School Healthcare Providers, Teachers, and Families:

• Field Trips and Extracurricular Activities and Transitioning To A New School (NBDF Steps For Living)
• Hemophilia Special Needs Fact Sheet for Schools (from Nemours Children’s Hospital)
• En español: Hoja informativa sobre la hemofilia (para las escuelas)
• What is Hemophilia
• What is Von Willebrand Disease
• What are Other Rare Bleeding Disorders
• The Care Team: Working Together to Support Students
• Typical Symptoms and First Aid for Hemophilia
• Identifying Types of Bleeds
• Plans to Support Students in School
• A Guide on When to Call your Child’s Hematologist or Pediatrician
• Visual Description of a Joint Bleed (from the World Federation of Hemophilia)
• Hemophilia in Pictures (from the World Federation of Hemophilia)
• Partners in Bleeding Disorders Education (has various units on School Nurse Education, Interactive Case Study, Emergency Care of Bleeding Disorders)

• Educating School Faculty and Staff 
• Possible 504 Plan Accommodations
• Hemophilia Federation of America’s (HFA’s) Back to School Toolkit (includes customizable PowerPoint presentations, sample Individual Healthcare Plans, sample 504 plans, and more)
• National Bleeding Disorders Foundation’s (NBDF’s) Steps for Living Guidance for Schools
• Individualized Health Care Plans (pdf that provides guidance on developing IHPs in Virgina) from the National Association of School Nurses – an IHP is a plan of care written by the registered nurse for students with or at risk for physical or mental health needs (ANA & NASN, 2017). It is the responsibility of the school nurse to annually evaluate the IHP, to reflect changes in the student’s healthcare needs and address nursing interventions and/or student healthcare outcomes.
• Individualized Education Program (webpage that provides information on IEPs in Virginia schools)

Virginia Bleeding Disorders Foundation (VABDF)

9702 Gayton Rd., Suite 277, Richmond, VA 23238
804-740-8643 | info@vabdf.org  | vabdf.org

Hemophilia Association of the Capital Area (HACA)

6412 Brandon Ave., Suite 412, Springfield, VA 22150
703-352-7641 | admin@hacacares.org | hacacares.org

• Cover Virginia (Virginia Medicaid and FAMIS Program)
• Virginia Department of Social Services Medical Assistance Programs

Hemophilia Federation of America (HFA)

820 First Street, NE, Suite 720, Washington, DC 20002
800-230-9797 | info@hemophiliafed.org | hemophiliafed.org

National Bleeding Disorders Foundation (NBDF)

Formerly the National Hemophilia Foundation (NHF)

7 Penn Plaza, Suite 1204, New York, NY 10001
212-328-3700 | info@bleeding.org | bleeding.org

• Virginia Department of Health | www.vdh.virginia.gov | 804-864-7026
• Centers for Disease Control and Prevention | www.cdc.gov | 1-800-232-4636
• FEMA/ National government | www.fema.gov | 1-800-621-FEMA
• Local Red Cross chapters | www.redcross.org | 1-800-RED CROSS

• American Liver Foundation
• American Association for the Study of Liver Diseases
• The Foundation for AIDS Research
• Hepatitis B Foundation
• HIV Positive.com
• NBDF and the Neil Frick Resource Center (formerly Hemophilia and AIDS/HIV Network for the Dissemination of Information, HANDI)

• National Council on Disability
• National Disability Rights Network
• National Heart, Lung, and Blood Institute
• National Institute of Allergy and Infectious Diseases
• Office of Disability Employment Policy
• U.S. Food and Drug Administration
• U.S. House of Representatives
• U.S. Senate
• Universal Data Collection
• Virginia General Assembly

Learn more about our advocacy here.

• American Association of Blood Banks
• American Society of Hematology
• American Thrombosis and Hemostasis Network (ATHN)
• Coalition for Hemophilia B
• LA Kelley Communications
• Medical and Scientific Advisory Council (MASAC) Recent Recommendations
• NBDF and the Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI)
• NBDF’s Community Voices in Research
• NBDF’s Hemaware
• NBDF’s Research Grants and Fellowships
• NBDF’s Steps for Living
• National Organization for Rare Disorders (NORD)
• Patient Notification System (Plasma Protein Therapeutics Association)
• Rare Coagulation Disorders
• Save One Life
• Virginia Bleeding Disorders Program

World Federation of Hemophilia USA (WFH)

PMB 142, 911 Central Avenue, Albany, NY 12206
602-512-9047 | info@wfhusa.org | wfhusa.org