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United Mitochondrial Disease Foundation

Disease Support Organization
Last Updated: May 22, 2020 03:13:47 pm
Established: 1995
Area Served: United States

The United Mitochondrial Disease Foundation strives to promote research and education for the diagnosis, treatment and cures of mitochondrial disorders and to provide support to affected individuals and families.

Diseases Supported
Alpers Syndrome • Barth syndrome • Carnitine Deficiency • Carnitine Palmitoyl Transferase 1 Deficiency • Carnitine Palmitoyl Transferase 2 Deficiency • Carnitine-Acylcarnitine Translocase Deficiency • Chronic Progressive External Ophthalmoplegia • Glutaric Acidemia Type II • Kearns-Sayre Syndrome • Lactic Acidosis • LCAD deficiency • LCHAD deficiency • Leber hereditary optic neuropathy • Leber hereditary optic neuropathy with dystonia • Leigh syndrome • Maternally inherited Leigh syndrome • Medium-chain acyl-coenzyme A dehydrogenase deficiency • Mitochondrial complex I deficiency • Mitochondrial complex II deficiency • Mitochondrial complex III deficiency • Mitochondrial complex IV deficiency • Mitochondrial complex V deficiency • Mitochondrial disorders • Mitochondrial encephalomyopathy lactic acidosis and stroke-like episodes • Mitochondrial myopathy with lactic acidosis • Mitochondrial neurogastrointestinal encephalopathy syndrome • Myoclonus with epilepsy with ragged red fibers • SCHAD Deficiency • Short chain acyl CoA dehydrogenase deficiency • Trifunctional protein deficiency • Very long chain acyl-CoA dehydrogenase deficiency • Infantile carnitine palmitoyltransferase II deficiency • Myopathic carnitine palmitoyltransferase II deficiency • Carnitine palmitoyltransferase II deficiency, lethal neonatal • Leigh syndrome due to mitochondrial complex II deficiency • Mitochondrial DNA depletion syndrome 2 • Mitochondrial myopathy, lethal, infantile • Carnitine uptake defect
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8085 Saltsburg Road
Suite 201
Pittsburgh, Pennsylvania 15239
United States
(888) 900-MITO(412)793-8077
1 address 3 contacts
Show All
Staff Speaks: English, None
Telephone Translation: No (Translation services available for other languages)

Our Organization

Incorporated Nonprofit National Organization 501(c)3 Non-Profit Professional/Medical Board Board of Directors Paid Staff

Our Financials

$3,348,000 Funding for Services $3,600,000 Annual Budget $529,000 Funding for Research
Funding Sources: PrivateDonations
This organization receives funding from a company that produces a test or treatment for the condition it serves: Yes
If yes, % of funding from such companies?

Our Membership

16,000 Membership Size N/A # of Chapters N/A Total Number on Mailing List 8,700 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

Resources

Disease resources include educational and informational materials that can be tagged to appear on specific disease pages.

Impact Report 2019
Publication Date: May 22, 2020
Category: General
Language(s): English
Disease(s): Alpers Syndrome • Barth syndrome • Carnitine Deficiency • Carnitine Palmitoyl Transferase 1 Deficiency • Carnitine Palmitoyl Transferase 2 Deficiency • Carnitine-Acylcarnitine Translocase Deficiency • Chronic Progressive External Ophthalmoplegia • Glutaric Acidemia Type II • Kearns-Sayre Syndrome • Lactic Acidosis • LCAD deficiency • LCHAD deficiency • Leber hereditary optic neuropathy • Leber hereditary optic neuropathy with dystonia • Leigh syndrome • Maternally inherited Leigh syndrome • Medium-chain acyl-coenzyme A dehydrogenase deficiency • Mitochondrial complex I deficiency • Mitochondrial complex II deficiency • Mitochondrial complex III deficiency • Mitochondrial complex IV deficiency • Mitochondrial complex V deficiency • Mitochondrial disorders • Mitochondrial encephalomyopathy lactic acidosis and stroke-like episodes • Mitochondrial myopathy with lactic acidosis • Mitochondrial neurogastrointestinal encephalopathy syndrome • Myoclonus with epilepsy with ragged red fibers • SCHAD Deficiency • Short chain acyl CoA dehydrogenase deficiency • Trifunctional protein deficiency • Very long chain acyl-CoA dehydrogenase deficiency • Infantile carnitine palmitoyltransferase II deficiency • Myopathic carnitine palmitoyltransferase II deficiency • Carnitine palmitoyltransferase II deficiency, lethal neonatal • Leigh syndrome due to mitochondrial complex II deficiency • Mitochondrial DNA depletion syndrome 2 • Mitochondrial myopathy, lethal, infantile • Carnitine uptake defect
https://www.umdf.org/impact/
UMDF National Resource Guide
Added On: Oct 29, 2012
Category: General
Language(s): English
Disease(s): Alpers Syndrome • Barth syndrome • Carnitine Deficiency • Carnitine Palmitoyl Transferase 1 Deficiency • Carnitine Palmitoyl Transferase 2 Deficiency • Carnitine-Acylcarnitine Translocase Deficiency • Chronic Progressive External Ophthalmoplegia • Glutaric Acidemia Type II • Kearns-Sayre Syndrome • Lactic Acidosis • LCAD deficiency • LCHAD deficiency • Leber hereditary optic neuropathy • Leber hereditary optic neuropathy with dystonia • Leigh syndrome • Maternally inherited Leigh syndrome • Medium-chain acyl-coenzyme A dehydrogenase deficiency • Mitochondrial complex I deficiency • Mitochondrial complex II deficiency • Mitochondrial complex III deficiency • Mitochondrial complex IV deficiency • Mitochondrial complex V deficiency • Mitochondrial disorders • Mitochondrial encephalomyopathy lactic acidosis and stroke-like episodes • Mitochondrial myopathy with lactic acidosis • Mitochondrial neurogastrointestinal encephalopathy syndrome • Myoclonus with epilepsy with ragged red fibers • SCHAD Deficiency • Short chain acyl CoA dehydrogenase deficiency • Trifunctional protein deficiency • Very long chain acyl-CoA dehydrogenase deficiency • Infantile carnitine palmitoyltransferase II deficiency • Myopathic carnitine palmitoyltransferase II deficiency • Carnitine palmitoyltransferase II deficiency, lethal neonatal • Leigh syndrome due to mitochondrial complex II deficiency • Mitochondrial DNA depletion syndrome 2 • Mitochondrial myopathy, lethal, infantile • Carnitine uptake defect
The UMDF Mitochondrial Resource Guide is available Online! It represents many hours of searching for the best information and resources to help you care for yourself and/or your family member affected by a mitochondrial disease.
Showing 2 of 2 resources.