NIH/NCATS GRDRSM Program (Rare Diseases Patient Registry)
ResearchMulti-Condition · Serves ALS/MND
9000 Rockville Pike Bethesday, MD 20892-2152, Massachusetts, United States
Research
Score by Dimension
Services Breadth
3/5
Advocacy Reach
N/A
Accessibility
5/5
Patient Support
N/A
Data Completeness
5/5
Network Connectivity
N/A
3 of 6 dimensions scored · 3 marked N/A (excluded from the average).
Auto-imported
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
9000 Rockville Pike Bethesday, MD 20892-2152
Mission
ALS/MND support organization in Massachusetts, United States. Provides advocacy, resources, and support for patients with ALS and their families.
Services
Health Data Networks and Initiatives
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