National Institute of Neurology & Neurosurgery, Havana - LAENALS Affiliate Site

Number of service categories this organization offers.

• ✓1 service category listed

How broadly this organization advocates and informs the ALS community.

• —Raises ALS awareness
• —Online information source
• —Publishes research / reports
• —International reach
• —Engages in policy / advocacy

How easy it is for patients and families to reach this organization.

• —Has website
• ✓Has phone number
• —Has email
• —Has street address
• ✓Has map coordinates

Breadth of direct support offered to patients and families.

• —In-person support groups
• —Online support groups
• —Caregiver resources in services
• —Funds or provides home care
• —Children's resources

Percentage of profile fields with information.

• ✓Name
• ✓Type
• ✓Country
• ✓State / region
• —Address
• ✓Phone
• —Email
• —Website
• ✓Mission

Connections to research consortia and ALS networks.

• —Part of a consortia
• —International reach
• —Publishes research
• —Maintains an ALS database
• —Mentions a known network (NEALS, ENCALS, TRICALS, etc.)

Contact

Mission

Cuba's flagship national neurological institute; LAENALS founding member country institution; **lowest documented ALS prevalence in the Americas** (0.55/100,000 in 2018). LAENALS founding country institution — Cuba is one of three founding LAENALS countries Lowest documented ALS prevalence in the Americas — 0.55 per 100,000 in 2018 (crude prevalence, adult population aged 15+) Lowest annual ALS incidence in LAENALS — 0.195 per 100,000 in 2018 Median survival from onset: 29 months (15-42.5 IQR) — between Chile and Uruguay 49 Cuban ALS patients included in LAENALS 2017-2019 cohort (55.1% men; mean age at onset 60.21 ± 12.45 years)