• Patients & Caregivers
  • Patient Organizations
  • Clinicians & Researchers
  • NORD en Español
  • Contact NORD
NORD logo with tag for website.
  • Donate
  • Rare Disease News
  • Find a Rare Disease
  • 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
        • Featured NORD Event
          • LRLS Thumbnail for rarediseases.orgNORD® Living Rare, Living Stronger® Patient & Family Meeting
          • Learn 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
        • NORD Claim Your Care®
        • Rare Disease Centers of Excellence
        • Continuing Medical Education (CME)
      • Partnering with the community
        • Corporate Council
        • National Partnerships
        • Global Partnerships
        • Rare Cancer Coalition®
        • NORD Rare Impact Awards®
      • Featured NORD Event
        • LRLS Thumbnail for rarediseases.orgNORD® Living Rare, Living Stronger® Patient & Family Meeting
        • 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
        • Patient-Focused Drug Development Meetings
      • 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)
        • All of Us Study
      • Featured NORD Event
        • Symposium thumbnailNORD Rare Disease Scientific Symposium
        • Learn More
  • 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®
          • 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
        • Featured NORD Event
        • Summit thumbnailNORD® Rare Diseases & Orphan Products Breakthrough Summit®
        • Learn More
  • 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
    • NORD® Living Rare, Living Stronger® Patient & Family Meeting
      • Learn 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
      • Claim Your Care
      • Rare Disease Centers of Excellence
      • Continuing Medical Education (CME)
    • Partnering with the community
      • Corporate Council
      • National Partnerships
      • Global Parnerships
    • NORD® Living Rare, Living Stronger® Patient & Family Meeting
      • 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)
      • All of Us Study
      • Add Your Expertise
    • NORD Rare Disease Scientific Symposium
      • Learn 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®
      • 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 / SNAP25 Foundation

SNAP25 Foundation

27 west 96 street
New York, NY, USA

917-375-9712

[email protected]

https://snap25.org/

About SNAP25 Foundation

We are dedicated to raising awareness of the genetic disorder caused by mutations in the gene SNAP25, and working towards finding a cure.
Facebook: https://www.facebook.com/groups/260251877

Related Rare Diseases:

  • SNAP25 Developmental and Epileptic Encephalopathy (SNAP25-DEE)
  • For Patients & Caregivers
  • For Organizations
  • For Clinicians & Researchers
Sign Up for NORD News

NORD Patient Hotline

NORD's Helpline is here for you. Reach us at 1-800-999-6673 or visit Contact Us.

Helpline hours:
Monday–Thursday 8:30am–7:00pm ET
Friday 8:30am–6:00pm ET

NORD Headquarters

120 Longwater Drive
Suite 105
Norwell, MA 02061

Mailing Address

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

Donation Mailing Address

NORD, Inc. – Donations
Dept. 5930
P.O. Box 4110
Woburn, MA 01888

Other Locations

Newport Coast, CA Office
21163 Newport Coast Drive
Suite 254
Newport Coast, CA 92657
Washington, DC Office
1779 Massachusetts Avenue
Suite 500
Washington, DC 20036
  • 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
    • Download a Subset of NORD’s Rare Disease Database
  • Driving Policy
    • NORD Policy Priorities
    • Taking Action
    • Join the Rare Action Network®
  • Donate
    • Donate to NORD
  • Get Involved
  • Legal
    • TradeMark & Brand Guidelines
    • Terms & Conditions
    • Privacy Policy
  • Rare Disease News
  • Resource Library
  • About Us
  • Media Inquiries
  • Get Involved
  • Careers
  • Sitemap
  • Contact

©2026 National Organization for Rare Disorders (NORD®). All rights reserved.
This material is proprietary and intended solely for the recipient. Reproduction, adaptation, distribution, or reuse without prior written permission from NORD is prohibited. NORD® and associated marks are trademarks of the National Organization for Rare Disorders.

2023TRbadge_lg Platinum_Transparency_2024 Four_Stars_Charity

Make 2026 Count: Gift research, care, and advocacy for families everywhere

Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.

  • Donor-Advised Funds
  • Donate Stock
  • Planned Giving
NORD logo for Rare Disorders site.

Access State Report Card Data

Please complete this form to access the requested resource.

Please consider sharing some basic information with us.

Name(Required)
Consent(Required)
This field is hidden when viewing the form
This field is for validation purposes and should be left unchanged.
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)
    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)
    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.