Skip to main content
Leaderboard Ad
  • National Hemophilia Foundation
  • Steps for Living
  • Victory for Women
  • Better You Know
  • Unite for Bleeding Disorders
  • Unite Your Way
Home
  • Contact Us
  • Subscribe
  • News
  • Events
  • Give
    • Give Now
      • Make a Donation
      • Give Monthly
      • Honor a Loved One
      • Support Research
      • Why NHF?
    • Join Us
      • For Young Professionals
      • Red Tie Soiree
      • Red Tie Campaign
      • Bleeding Disorders Awareness Month
      • Find a Walk
    • Other Ways to Give
      • Be a Corporate Partner
      • Create a Will
      • Make a Planned Gift
      • Donate Your Car
      • Give Stock
      • Donor Advised Funds
    • Fundraise for NHF
      • 2021 TCS New York City Marathon
      • Create Your Own Fundraiser
      • Fundraise on Facebook
      • NHF GO

Main navigation

  • Who We Are
  • Bleeding Disorders A-Z
  • Educational Programs
  • Advocacy
  • Research
  • Healthcare Professionals
  • Community Resources
  • Our Story
  • Mission & History
  • What We Do
  • What Do We Value?
  • Accomplishments
  • Financial Statements
  • NHF Newsroom
  • Our Team
  • Staff
  • Board of Directors
  • MASAC
  • Meet the NYLI
  • Nursing Working Group
  • Physical Therapy Working Group
  • Social Work Working Group
  • Our Partners
  • Partners In Progress
  • The ACT Initiative
  • Red Tie Society
  • CDC Coop Agreement
  • Careers
  • What Do We Value?
  • Job Openings
  • Volunteer Opportunities
  • Overview
  • Fast Facts
  • What is a Bleeding Disorder?
  • History
  • Types of Bleeds
  • Inhibitors
  • Women and Bleeding Disorders
  • Types
  • Hemophilia A
  • Hemophilia B
  • Von Willebrand Disease
  • Other Factor Deficiencies
  • Inherited Platelet Disorders
  • Treatment
  • Comprehensive Medical Care
  • Treatment Guidelines (MASAC)
  • Current Treatments
  • Future Therapies
  • Clinical Trials
  • Healthcare Coverage
  • Choosing an Insurance Plan
  • Private Insurance
  • Public Insurance
  • Health Insurance Toolkit
  • Education
  • Inhibitor Education
  • Online Education
  • Rare Bleeding Disorders
  • Von Willebrand Disease
  • Mental Health
  • Gene and Innovative Therapies
  • Women
  • Virtual Programming
  • Training
  • Steps for Living Facilitation Training
  • Youth Leadership (NYLI)
  • Youth International Twinning Partnership
  • Outreach
  • Undiagnosed
  • Guías Culturales
  • Health Equity Working Group
  • Federal Priorities
  • Access to Care
  • Federal Programs
  • Medicare
  • Medicaid
  • Blood & Blood Product Safety
  • State Priorities
  • Utilization Management
  • Patient Out-of-Pocket Expenses
  • Medicaid
  • How You Can Take Action
  • Register to Vote
  • Washington Days
  • Advocacy Do’s and Don’ts
  • 6 Steps for Grassroots Advocacy
  • Tell Your Story
  • Research Projects
  • Funded by NHF
  • Presented at Our Conference
  • Research Journal Club
  • Fund Your Research
  • Judith Graham Pool Postdoctoral Research Fellowship
  • Career Development Award
  • Bridge Award
  • Innovative Investigator Research Award
  • Jeanne Marie Lusher Diversity Fellowship
  • Nursing Excellence Fellowship
  • Physical Therapy Excellence Fellowship
  • Social Work Excellence Fellowship
  • Community Voices in Research
  • What is CVR?
  • How & Why Should I Participate?
  • Impact on Research
  • Frequently Asked Questions
  • National Research Blueprint
  • What is the National Research Blueprint?
  • Input from Across the Community
  • Building on the Blueprint
  • Research Priorities
  • State of the Science Research Summit
  • Guidelines on Care
  • Comprehensive Care
  • MASAC Documents
  • Products Licensed (US)
  • Emergency Management
  • Snapshots of VWD Guidelines
  • Education & Resources
  • BDC: Provider Enduring Web Activity
  • NHF-Takeda Clinical Fellowship Program
  • Online Education Activities for Providers
  • Live & Online Learning (Partners)
  • Rare Coagulation Resource Room
  • Peer-reviewed Journals
  • NHF Publications
  • Other Associations
  • Allied Healthcare
  • Nursing
  • Physical Therapy
  • Social Work
  • Managed Care & Payers
  • Collaborating on Coverage
  • Quality of Care Guidelines
  • CME/CE Webcast Series
  • Educational Web Portal
  • Quality Improvement & Cost Management
  • Request Information
  • Call Our Information Center
  • Read Our Publications
  • Subscribe for Email Updates
  • Get HemAware Magazine
  • Newsletter Archive
  • Resources Near You
  • NHF Chapters
  • Hemophilia Treatment Centers
  • Clinical Trials
  • Bleeding Disorders Camps
  • Financial Assistance
  • Scholarships
  • Patient Assistance Programs
Home
  • Who We Are
    • Our Story
      • Mission & History
      • What We Do
      • What Do We Value?
      • Accomplishments
      • Financial Statements
      • NHF Newsroom
    • Our Team
      • Staff
      • Board of Directors
      • MASAC
      • Meet the NYLI
      • Nursing Working Group
      • Physical Therapy Working Group
      • Social Work Working Group
    • Our Partners
      • Partners In Progress
      • The ACT Initiative
      • Red Tie Society
      • CDC Coop Agreement
    • Careers
      • What Do We Value?
      • Job Openings
      • Volunteer Opportunities
  • Bleeding Disorders A-Z
    • Overview
      • Fast Facts
      • What is a Bleeding Disorder?
      • History
      • Types of Bleeds
      • Inhibitors
      • Women and Bleeding Disorders
    • Types
      • Hemophilia A
      • Hemophilia B
      • Von Willebrand Disease
      • Other Factor Deficiencies
      • Inherited Platelet Disorders
    • Treatment
      • Comprehensive Medical Care
      • Treatment Guidelines (MASAC)
      • Current Treatments
      • Future Therapies
      • Clinical Trials
    • Healthcare Coverage
      • Choosing an Insurance Plan
      • Private Insurance
      • Public Insurance
      • Health Insurance Toolkit
  • Educational Programs
    • Education
      • Inhibitor Education
      • Online Education
      • Rare Bleeding Disorders
      • Von Willebrand Disease
      • Mental Health
      • Gene and Innovative Therapies
      • Women
      • Virtual Programming
    • Training
      • Steps for Living Facilitation Training
      • Youth Leadership (NYLI)
      • Youth International Twinning Partnership
    • Outreach
      • Undiagnosed
      • Guías Culturales
      • Health Equity Working Group
  • Advocacy
    • Federal Priorities
      • Access to Care
      • Federal Programs
      • Medicare
      • Medicaid
      • Blood & Blood Product Safety
    • State Priorities
      • Utilization Management
      • Patient Out-of-Pocket Expenses
      • Medicaid
    • How You Can Take Action
      • Register to Vote
      • Washington Days
      • Advocacy Do’s and Don’ts
      • 6 Steps for Grassroots Advocacy
      • Tell Your Story
  • Research
    • Research Projects
      • Funded by NHF
      • Presented at Our Conference
      • Research Journal Club
    • Fund Your Research
      • Judith Graham Pool Postdoctoral Research Fellowship
      • Career Development Award
      • Bridge Award
      • Innovative Investigator Research Award
      • Jeanne Marie Lusher Diversity Fellowship
      • Nursing Excellence Fellowship
      • Physical Therapy Excellence Fellowship
      • Social Work Excellence Fellowship
    • Community Voices in Research
      • What is CVR?
      • How & Why Should I Participate?
      • Impact on Research
      • Frequently Asked Questions
    • National Research Blueprint
      • What is the National Research Blueprint?
      • Input from Across the Community
      • Building on the Blueprint
      • Research Priorities
      • State of the Science Research Summit
  • Healthcare Professionals
    • Guidelines on Care
      • Comprehensive Care
      • MASAC Documents
      • Products Licensed (US)
      • Emergency Management
      • Snapshots of VWD Guidelines
    • Education & Resources
      • BDC: Provider Enduring Web Activity
      • NHF-Takeda Clinical Fellowship Program
      • Online Education Activities for Providers
      • Live & Online Learning (Partners)
      • Rare Coagulation Resource Room
      • Peer-reviewed Journals
      • NHF Publications
      • Other Associations
    • Allied Healthcare
      • Nursing
      • Physical Therapy
      • Social Work
    • Managed Care & Payers
      • Collaborating on Coverage
      • Quality of Care Guidelines
      • CME/CE Webcast Series
      • Educational Web Portal
      • Quality Improvement & Cost Management
  • Community Resources
    • Request Information
      • Call Our Information Center
      • Read Our Publications
      • Subscribe for Email Updates
      • Get HemAware Magazine
      • Newsletter Archive
    • Resources Near You
      • NHF Chapters
      • Hemophilia Treatment Centers
      • Clinical Trials
      • Bleeding Disorders Camps
    • Financial Assistance
      • Scholarships
      • Patient Assistance Programs
  • Contact Us
  • Subscribe
  • News
  • Events
  • Give
    • Give Now
      • Make a Donation
      • Give Monthly
      • Honor a Loved One
      • Support Research
      • Why NHF?
    • Join Us
      • For Young Professionals
      • Red Tie Soiree
      • Red Tie Campaign
      • Bleeding Disorders Awareness Month
      • Find a Walk
    • Other Ways to Give
      • Be a Corporate Partner
      • Create a Will
      • Make a Planned Gift
      • Donate Your Car
      • Give Stock
      • Donor Advised Funds
    • Fundraise for NHF
      • 2021 TCS New York City Marathon
      • Create Your Own Fundraiser
      • Fundraise on Facebook
      • NHF GO
National Hemophilia Foundation Steps for Living Victory for Women Better You Know Unite for Bleeding Disorders Unite Your Way

Tell Your Story

Your experiences are the most valuable tool you have as an advocate for people with bleeding disorders.
  1. Home
  2. Advocacy
  3. How You Can Take Action
  4. Tell Your Story

Share

Main navigation

  • Register to Vote
  • Washington Days
  • Advocacy Do’s and Don’ts
  • 6 Steps for Grassroots Advocacy
  • Tell Your Story
Advertisement

Contact us

Bill Robie
Bill Robie
Government Relations Specialist
mail brobie@hemophilia.org
phone (541) 508-9629

Contact us

7 Penn Plaza Suite 1204, New York, NY 10001, United States
212.328.3700
212.328.3777

About NHF

  • Our Mission
  • What We Do
  • Our Team
  • Join Us
  • Request Information

Resources

  • NHF Chapters
  • HTC Search
  • Clinical Trials
  • Scholarships
  • Camp Near You

Give

  • Donate
  • Fundraise for NHF
  • Other Ways to Give
  • Volunteer
  • Why NHF?

Legal

  • Privacy Policy
  • Medical Disclaimer
  • Gift Acceptance
  • Conflict of Interest
  • Whistleblower
National Hemophilia Foundation logo

©  National Hemophilia Foundation
All rights reserved. 

Charity Navigator