• Patients & Caregivers
  • Patient Organizations
  • Clinicians & Researchers
  • NORD en Español
  • Contact NORD
NORD logo with tag for website.
  • Donate
  • Rare Disease News
  • Resource Library
  • About Us
  • Events
  • Understanding Rare Disease
        • Where to start
          • Rare Disease Facts and Statistics
          • NORD’s Rare Disease Database
          • Rare Disease Video Library
          • Help for People with Undiagnosed Medical Conditions
          • Find A Rare Disease Organization
          • A Parent’s Guide to Rare Disease Diagnosis in Children
          • A PCP Primer to Diagnosing Rare Disease in Children
        • Stay informed
          • Stories That Inspire
          • RareEdu® – Online Learning Platform
          • Rare Disease Day
          • Resource Library
          • State Resource Center
          • Publications On Rare Disease
        • Patient stories
          • Person enjoying McDonald's after DBS surgery.Christina’s Lease on Life
          • Read More
  • Living with a Rare Disease
        • Manage your care
          • Getting Help & Support
          • Managing Your Disease
          • Telemedicine Resources
        • We can help
          • How NORD Can Help
          • Speak To Someone at NORD
          • Rare Disease Centers Of Excellence
          • Patient Assistance Programs
          • Explore Clinical Trials
          • Find A Patient Organization
          • Caregiver Resources
        • Discover Local Resources
        • State-Resource-Cente
  • Community Support
      • Where to start
        • Rare Diseases Defined
        • Financial & Medical Assistance
        • Call Center & Information Services
        • Bringing Together Your Community
      • Mentoring organizations
        • NORD Member List
        • Start a Rare Disease Organization
        • Membership Program
        • Becoming Research Ready
        • Patient-Focused Drug Development
      • Improving clinical care
        • Rare Disease Centers of Excellence
        • Continuing Medical Education (CME)
      • Partnering with the community
        • Corporate Council
        • National Partnerships
        • Global Partnerships
        • Rare Cancer Coalition
      • Community Support
        • Diverse group showing friendship and support.Together We Are Strong.
        • Learn More
  • Advancing Research
      • For patients
        • List of Rare Diseases
        • Gene Therapy for Rare Disease
        • Find Clinical Trials & Research Studies
      • For researchers
        • Request for Proposals
        • Research Grant Programs
        • Data Standards for Rare Diseases
      • For clinicians
        • Resources for Patients
        • Find a Rare Disease Care Center
        • Continuing Medical Education (CME)
      • Connect
        • IAMRARE® Program Powered by NORD
        • Rare Disease Cures Accelerator (RDCA-DAP)
        • Add Your Expertise
      • Featured Publication
        • How To Advocate For Rare Disease-Related Policies
        • Download Publication
  • Driving Policy
        • NORD policy and you
          • Public Policy Positions
          • Policy Statements & Letters to Policymakers
          • Rare Disease Advisory Councils
          • NORD State Report Card
        • Taking action
          • Join the Rare Action Network®
          • Policy & Advocacy Taskforce
          • Take Action on Key Issues
          • Advocate for Rare Disease Policies as a Health Care Professional
        • Join A Current Campaign.
          • NORD policy alert notification icon imageLearn about our current policy goals
          • Take Action
  • Get Involved
      • Raising Awareness & Funds with NORD
        • Do-It-Yourself NORD Fundraiser
        • NORD Students for Rare
        • Sports & Fitness Fundraisers
        • Media Inquiries
      • In your community
        • Attend An Upcoming Event
        • Find a Rare Disease Patient Organization
        • Stay Informed With NORD’s Email Newsletter
        • Rare Disease Day®
      • Patient stories
        • Share Your Story
        • Careers At NORD
        • Intern At NORD
        • Jobs At Patient Disease Organizations
      • Corporate Council
        • About the Corporate Council
        • Corporate Council Members
        • Join Corporate Council
        • Code of Conduct
      • Show Your Support
        • Donate to NORD
        • Volunteer with NORD
        • Visit the NORD Store
  • Donate
  • Understanding Rare Disease
    • Where to start
      • Rare Disease Facts and Statistics
      • NORD’s Rare Disease Database
      • Rare Disease Video Library
      • What It Means To Be Undiagnosed
      • Find A Rare Disease Organization
      • A Parent’s Guide to Rare Disease Diagnosis in Children
      • A PCP Primer to Diagnosing Rare Disease in Children
    • Stay informed
      • Stories That Inspire
      • RareEdu® – Online Learning Platform
      • Rare Disease Day
      • Resource Library
      • State Resource Center – Find Local Resources
      • Publications On Rare Disease
    • Patient stories
      • Read More
  • Living with a Rare Disease
    • Manage your care
      • Getting Help & Support
      • Managing Your Disease
    • We can help
      • How NORD Can Help
      • Speak To Someone at NORD
      • Rare Disease Center Of Excellence
      • Patient Assistance Programs
      • Explore Clinical Trials
      • Find A Patient Organization
      • Caregiver Resources
      • State Resource Center – Discover Local Resources
  • Community Support
    • Where to start
      • Rare Diseases Defined
      • Financial & Medical Assistance
      • Call Center & Information Services
      • Bringing Together Your Community
    • Mentoring organizations
      • NORD Member List
      • Start a Rare Disease Organization
      • Membership Program
      • Becoming Research Ready
      • Launching Registries & Natural History Studies
      • Patient-Focused Drug Development
    • Improving clinical care
      • Rare Disease Centers of Excellence
      • Continuing Medical Education (CME)
    • Partnering with the community
      • Corporate Council
      • National Partnerships
      • Global Parnerships
    • Community Support
      • Learn More
  • Advancing Research
    • For patients
      • List of Rare Diseases
      • Gene Therapy for Rare Disease
      • Find Clinical Trials & Research Studies
    • For researchers
      • Request for Proposals
      • Research Grant Programs
      • Data Standards for Rare Diseases
    • For clinicians
      • Resources for Patients
      • Find a Rare Disease Care Center
      • Continuing Medical Education (CME)
    • Connect
      • IAMRARE® Program Powered by NORD
      • Rare Disease Cures Accelerator (RDCA-DAP)
      • Add Your Expertise
    • Featured publication
      • View More
  • Driving Policy
    • NORD policy and you
      • Today’s Policy Issues
      • NORD’s Policy Statements
      • Rare Disease Advisory Councils
      • NORD State Report Card
    • Taking action
      • Join the Rare Action Network®
      • Policy & Advocacy Taskforce
      • Contact your Representative
      • Take Action on Key Issues
      • Advocate for Rare Disease Policies as a Health Care Professional
    • Join A Current Campaign.
      • Learn about our current policy goals
  • Get Involved
    • Raising awareness and funds with NORD
      • Do-It-Yourself NORD Fundraiser
      • NORD Students for Rare
      • Sports & Fitness Fundraisers
      • Media Inquiries
    • In your community
      • Attend An Upcoming Event
      • Find a Rare Disease Patient Organization
      • Stay Informed With NORD’s Email Newsletter
      • Rare Disease Day®
    • Patient stories
      • Share Your Story
      • Careers At NORD
      • Intern At NORD
      • Jobs At Patient Disease Organizations
    • Show your support
      • Donate to NORD
      • Volunteer with NORD
      • Visit the NORD Store
  • Rare Disease News
  • Resource Library
  • About Us
  • For Clinicians & Researchers
  • For Patient Organizations
Home / Patient Organizations / Patient Organizations / Hereditary Leiomyomatosis & Renal Cell Cancer Family Alliance
NORD State Resource Center Sidebar photo.

Hereditary Leiomyomatosis & Renal Cell Cancer Family Alliance

c/o VHL Alliance 1208 VFW Parkway,
Suite 303
Boston, MA, USA

617-277-5667

[email protected]

http://hlrccinfo.org/

  • For Patients & Caregivers
  • For Organizations
  • For Clinicians & Researchers
Sign Up for NORD News

National Organization for Rare Disorders (NORD)

1900 Crown Colony Drive
Suite 310
Quincy, MA 02169
Phone: 617-249-7300

Other Locations:

Danbury, CT Office
7 Kenosia Avenue
Danbury, CT 06810
Phone: 203-744-0100
Fax: 203-263-9938

Washington, DC Office
1779 Massachusetts Avenue
Suite 500
Washington, DC 20036
Phone: 202-588-5700

 

  • Understanding Rare Disease
    • Where to Start
    • Stay Informed
    • Patient Stories
  • Living with a Rare Disease
    • Manage Your Care
    • We Can Help
  • Community Support
    • Where to Start
    • Mentoring Organizations
    • Improving Clinical Care
    • Partnering With the Community
    • Community Support
  • Advancing Research
    • For Patients
    • For Researchers
    • For Clinicians
    • Connect
    • Publications
  • Driving Policy
    • NORD Policy Priorities
    • Taking Action
    • Join the Rare Action Network®
  • Donate
    • Donate to NORD
    • Donate to Research
  • Get Involved
  • Legal
    • TradeMark & Brand Guidelines
    • Terms & Conditions
    • Privacy Policy
  • Rare Disease News
  • Resource Library
  • About Us
  • Media Inquiries
  • Get Involved
  • Careers
  • Sitemap
  • Contact
NORD logo in white and orange.

Copyright ©2025 NORD – National Organization for Rare Disorders, Inc. All rights reserved.

NORD is a registered 501(c)(3) charity organization.
Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.

2023TRbadge_lg Platinum_Transparency_2024 Four_Stars_Charity

Rare deserves care.
Make a difference TODAY!

One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.

  • Donor-Advised Funds
  • Donate Stock
  • Planned Giving
NORD logo for Rare Disorders site.
Max. 5 words
Max file size 5MB. Min. image size 260px X 260px
Drop files here or
Max. file size: 5 MB.
    Max. 15 words
    Consent(Required)
    In these Standard Terms and Conditions, “Your Content” refers to any audio, video, text, images, or other material you provide or display. By providing “Your Content”, you grant NORD a license to read, use, reproduce, adapt, modify, publish, translate, and distribute the content in our marketing materials and to all media. “Your Content” must be your own and must not invade any third‐party’s rights. When you submit content or information to NORD, you are allowing the public to access and use that information, and to associate it with you. NORD reserves the right to remove “Your Content” at any time, without notice. We take your privacy very seriously. Subject to the Terms and Conditions above, NORD will never sell or disclose your personal information.
    This field is for validation purposes and should be left unchanged.
    Name(Required)
    Email(Required)
    Drop files here or
    Accepted file types: jpeg, png, jpg, Max. file size: 3 MB.
      Please let us know what's on your mind. Have a question for us? Ask away.
      This field is for validation purposes and should be left unchanged.
      Name(Required)
      Email(Required)
      Please let us know what's on your mind. Have a question for us? Ask away.
      This field is for validation purposes and should be left unchanged.