SETBP1 Society Disease Support Organization Last Updated: Oct 1, 2019 04:48:05 pm Established: 2017 Area Served: International Our Mission is to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public. Website: http://www.setbp1.org/ Diseases Supported Schinzel Giedion syndrome • SETBP1 disorder Types of Diseases Supported Rare Condition or Disease • Genetic, autosomal dominant • Epigenetic • Pediatric onset • Developmental disability (both intellectual and physical disabilities) • Intellectual disability (no physical disability) • Neuorolgical, unspecified Show All 7Show Less P.O. Box 301584 Austin, Texas 78703 United States 512-522-8072 firstname.lastname@example.org 1 address 1 contact Show All Connect: Staff Speaks: English, French Telephone Translation: No (Translation services available for other languages) Our Organization Incorporated Nonprofit International Organization 501(c)3 Non-Profit Professional/Medical Board Board of Directors Paid Staff Our Financials N/A Funding for Services N/A Annual Budget N/A Funding for Research Funding Sources: Donations This organization receives funding from a company that produces a test or treatment for the condition it serves: No If yes, % of funding from such companies? Our Membership What We Do Support & Peer Matching Referrals to Matching Individuals/Families Peer Support Peer-to-peer Counseling Referrals to Local Chapter or Group Patient Navigators Translation Services Therapy & Counseling Professional Counseling Crisis Intervention Grief Counseling Medical Referrals Medical Care Clinical or Treatment Centers Rehabilitation Services Respite Care Genetic Testing Genetic Counseling Legal Advice Workplace Issues Malpractice Help with Adoption or Placement Financial Assistance Medical Care Transportation Assistive devices Insurance Scholarships Home Modifications Research Referrals to Research Studies Registry of affected individuals Blood and Tissue Sample Storage Education & Training Telephone Helpline E-mail List Training Speakers Bureau Advocacy Training Other Pen pal Program Summer Camp This entry will be permanently deleted. Are you sure you want to continue? Are you sure you want to change the status of this editor?