2nd Opinion Program

ULF Second Opinion Program

The ULF offers a Second Opinion Program (SOP) that provides an opportunity for those patients that have a Leukodystrophy or white matter disorder that is undetermined, to have their records reviewed by a team of international medical scientists with various areas of expertise. This program is strictly voluntary with minimal costs to the patient and is administered by the United Leukodystrophy Foundation (ULF).

You may participate by following the guidelines below:

  1. Contact the ULF office at 1-800-728-5483 or 815-748-3211 for SOP questionnaire.
  2. Obtain copies of all pertinent medical records, laboratory tests and results, and MRI and CAT scans (CD/DVD required). Records may be sent by you with the questionnaire or separately from each medical facility directly to the ULF. Original copies of records should not be sent since multiple specialists in different countries may be reviewing reports. Reassembling and returning records may be difficult.
  3. Send your check, money order or credit card payment of $200.00 payable to the ULF to cover administrative expenses. You may be able to file a reimbursement claim with your insurance company. Please contact the ULF office if you need a receipt for that purpose or need additional information such as procedure or diagnosis code numbers.
  4. Communication will be handled by the ULF. When your report from the Second Opinion Committee is complete, it will be immediately passed on to you from the ULF office. Six months from the time all records are received may be required before a report is made.

All correspondence should be addressed to:
Second Opinion Committee
United Leukodystrophy Foundation
224 N 2nd Street, Suite 2
DeKalb, IL 60115

800-728-5483

815-748-3211