CIB ALS center
Research50 Staniford St, Suite 401, Boston, MA 02114, Massachusetts, United States
Score by Dimension
Score breakdown
Services Breadth
3/5Number of service categories this organization offers.
- ✓1 service category listed
Advocacy Reach
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
Accessibility
5/5How easy it is for patients and families to reach this organization.
- ✓Has website
- ✓Has phone number
- ✓Has email
- ✓Has street address
- ✓Has map coordinates
Patient Support
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
Data Completeness
5/5Percentage of profile fields with information.
- ✓Name
- ✓Type
- ✓Country
- ✓State / region
- ✓Address
- ✓Phone
- ✓Website
- ✓Mission
Network Connectivity
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
The mission of the ALS/MND Natural History Consortium is to collect real-world data about ALS, make it available for ALS research and inform clinical trial design. This will lead to better understanding of the disease and enable improved care practices for people living with ALS.
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