MDA Neuromuscular Disease Registry
Research1016 W Jackson Blvd #1073 Chicago, IL 60607, Illinois, 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
With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities.
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