Ben's Friends Disease Support Organization Last Updated: Jan 3, 2019 03:54:07 pm Established: 2007 Area Served: International Our mission is to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them. Website: http://www.bensfriends.org Diseases Supported Adrenoleukodystrophy • Ataxia • Charcot-Marie-Tooth Disease • Chronic Inflammatory Demyelinating Polyneuropathy • Ehlers-Danlos syndrome • Erythromelalgia, Primary • Fabry Disease • Guillain-Barre Syndrome • Intracranial arteriovenous malformation • Lupus • Multiple myeloma • Myositis • Narcolepsy • Nephrotic syndrome ocular anomalies • Psoriatic arthritis • Sjogren's Syndrome • Sjogren's syndrome, juvenile, secondary to autoimmune disease • Synovial sarcoma • Trigeminal neuralgia • Von Willebrand Disease Show All 20Show Less 2450 Louisiana St. Suite 400-166 Houston, Texas 77006 United States 31024561983102456198 email@example.com 1 address 1 contact Show All Connect: Staff Speaks: English Telephone Translation: No (Translation services available for other languages) Our Organization Incorporated Nonprofit International Organization 501(c)3 Status Professional/Medical Board Board of Directors Paid Staff Our Financials This organization has not provided Financial details. N/A Funding for Services N/A Annual Budget N/A Funding for Research Our Membership N/A Membership Size N/A # of Chapters N/A Total Number on Mailing List N/A People with Conditions in Your Mailing List 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?