The International Society of Amyloidosis (ISA) maintains a global directory of amyloidosis centers to help patients, families, clinicians and referring providers identify institutions with experience in diagnosing and managing amyloidosis.

The directory is an informational resource only. It does not certify quality of care, guarantee outcomes, or imply endorsement by ISA.

How Centers Qualify for Listing

Centers included in the ISA Centre Directory must demonstrate core capabilities consistent with recognized multidisciplinary approaches to amyloidosis care. Multidisciplinary amyloidosis centers may exhibit different levels of expertise and deliver varying levels of care, as recognized in ISA’s position statement : “A collaborative approach to amyloidosis and a multidisciplinary care framework”

To be listed, a center must provide information about the following:

• Multidisciplinary expertise, including access to clinicians in hematology, cardiology, nephrology, neurology and pathology.
• Diagnostic capability, including Congo red staining, amyloid typing (on site or through partner laboratories), and access to genetic testing for transthyretin and other clinically relevant mutations.
• Experience across key amyloidosis subtypes, including AL, hereditary transthyretin (ATTRv), wild-type transthyretin (ATTRwt) and AA amyloidosis, with documented referral pathways for rarer subtypes.
• Treatment access, either through delivery of standard therapies for AL and ATTR amyloidosis or through established referral pathways to appropriate centers.
• Public transparency, with a webpage describing the center’s amyloidosis services, diagnostic access, treatment options and referral contacts.
• Accurate and complete information, submitted through the official ISA Centre Directory Form.

Additional Capabilities

Some centers provide expanded services such as:

• cardiac MRI and nuclear imaging
• mass spectrometry for amyloid typing
• stem cell transplantation or organ transplantation
• access to clinical trials
• genetic counselling
• specialty pharmacy services
• telemedicine support
• psychosocial support.

These capabilities are self-reported and published to help patients and providers understand the range of services available at each center. ISA does not independently verify, inspect or certify these services.

Application and Updates

Centers apply for listing by completing the ISA Centre Directory Form and providing publicly accessible information about their services.

Listed centers must:

• confirm their information at least annually, and
• notify ISA of any material changes to their services, capabilities or contact details.

ISA may request updates or clarifications at any time to maintain directory accuracy.

Changes to Listings

ISA may modify, suspend or remove a listing at any time if information becomes outdated, incomplete or inconsistent, or if ISA determines that the listing no longer meets the directory criteria. ISA may also revise its directory criteria or structure as needed.

Important Disclaimer

The ISA Centre Directory is based on self-reported information provided by individual centers. Inclusion in the directory does not constitute accreditation, certification, endorsement, quality ranking or verification by ISA. ISA does not review or evaluate clinical outcomes or regulatory compliance. Patients and providers should confirm information directly with listed centers.

Contact

Centers or individuals with questions about the ISA Centre Directory may contact the ISA Office: info@isaamyloidosis.org

References

• ISA Centre Directory Application Form

Amyloidosis Centers by Region

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