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The pathway
How Manus Alba support works
Every request is a complex case: we address it together with our partner specialized centers through a structured two-step process.
Step 1
Collecting and reviewing medical records
With the help of a checklist and support from Manus Alba, the family gathers the following documents:
- Contact details of the local treating physician
- Which experts have already been contacted, and what their findings were
- Most recent medical report, including complete medical history and findings (optional: a video of the affected individual)
- Most recent brain MRI (cMRI), in original form and in a readable format
Manus Alba then sends the complete documentation to a partner leukodystrophy center for review. The goal of the review is to:
- Provide specific recommendations for further treatment at the local facility
- Recommend a referral to a specific specialized center, if appropriate
- Offer an online video consultation, if appropriate
- Have the initially contacted center decide whether additional experts or centers need to be involved
Since reviewing the documentation is usually very time-consuming, families are asked to pay a flat consultation fee (approximately €300). The same applies to any video consultation used. In many cases this makes it possible to provide appropriate support without a time-consuming trip to a center.
Step 2
Referral to a specialized leukodystrophy center
A referral to a specialized center is generally advisable when:
- A transplant or gene therapy is indicated
- Specific treatment options are available only at that center
- Participation in a clinical trial appears feasible
Referrals to such centers typically involve specific logistical requirements that families need to determine case by case, including:
- Country-specific entry regulations
- A deposit is usually required before the consultation begins; the amount depends on the services expected to be used:
| Medical examination and consultation | approx. €200–500 |
| MRI | approx. €500–1,000 |
| Planned stem cell transplant | approx. €200,000–300,000 |
Families must be informed in advance of the costs they will incur — treatment is generally not possible without guaranteed coverage of costs.
Ready to get started?
Contact us to receive the detailed checklist and start gathering the documentation.
Contact us