COMMON MAPS
Map version new-york activity top-down
MCP Main site Contact
Menu
← edit slice ·
·
landscape scan →

Rare Genetic Disease Research and Advocacy

Every indexed organization working in the activity groups below — who they are, where they operate, and the approaches they share.

01 Rare Genetic Disease Research and Advocacy · 220 activities edit slice
105
orgs
220
activities
31
strategies
NY
epicenter
the opening take
This slice touches 105 organizations and 220 activities — ZTTK SON-SHINE FOUNDATION, KIF1AORG, THE BARTH SYNDROME FOUNDATION, G6PD DEFICIENCY FOUNDATION and others. Activity concentrates in New York (100%). The field's most common shared approach is "Venture Philanthropy Model", run by 56 orgs.
who to look at first

Shortlist

Ranked by activity breadth, method diversity, and network reach across the slice. Attach a memo to this report and this list re-ranks around your intent.

where this slice is thin

Gap signals

Concrete structural gaps — method mix, geographic concentration, coalition density, funder diversity. Evidence is cited from the slice's own numbers.

where the field lives · works

Geography

Orange headquarters dots are sized by how many grantees are based in the state. Green circles mark real locations these orgs say they serve — from city-level populations in this slice's impact_map_populations data. Toggle layers at the bottom right.

regional breakdown · hq density
New York 100% · 105 orgs
who's here

Organizations in this field · 105

sort by
direct service advocacy research capacity building
where the money comes from

Funders already active in this field

Funders named as a funding source on these orgs' own materials. The count is the number of orgs in this slice that cite them — higher means a funder with demonstrable commitment to the field.

Alvarez & Marsal 1
Corporate
Amgen 1
Corporate
Annual Sponsored Walk Out Shirt Initiative 1
Earned
Bethpage Physical Therapy East 1
Corporate
Chan Zuckerberg Initiative 1
Foundation
Crown Energy Corp 1
Corporate
D1 Multisport 1
Corporate
Deerfield 1
Government
Dodge for Josh tournament 1
Earned
Energy Fitness 1
Corporate
Ernst & Young 1
Corporate
Genzyme 1
Corporate
Government agencies 1
Government
Industry partners 1
Corporate
how the field thinks

Strategies in this slice

Theories of action extracted from the orgs in this slice. The count is how many orgs cite each one — a strategy run by many orgs in common is a through-line; one cited by a single org is still surfaced so the reader can gauge the full spread.

where strategy meets practice

Strategies × activity types

How each shared strategy breaks down across the four activity types the orgs running it actually do.

direct service
advocacy
research
capacity building
Venture Philanthropy Model
39
30
55
17
Research-Advocacy Integration
15
14
18
6
Patient-Centered Research Acceleration
5
3
21
3
100% Direct Funding Model
3
4
5
1
Story-Based Engagement
2
5
12
1
Patient-Centered Education and Empowerment
4
2
3
Peer-Led Holistic Support
4
3
2
Holistic, Patient-Centered Integration
4
2
who works with whom

Named partnerships · coalitions · networks

Entities these orgs explicitly call out as partners, coalition members, or networks — relationships the orgs claim on their own sites.

National Institutes of Health Partner
shared by 7 orgs
Boston Children's Hospital Partner
shared by 5 orgs
Citizen Health Partner
shared by 5 orgs
Facebook Partner
shared by 5 orgs
NORD Partner
shared by 5 orgs
National Organization for Rare Disorders Partner
shared by 5 orgs
Stanford University Partner
shared by 5 orgs
Baylor College of Medicine Partner
shared by 4 orgs
Columbia University Irving Medical Center Partner
shared by 4 orgs
Massachusetts General Hospital Partner
shared by 4 orgs
Northwestern University Partner
shared by 4 orgs
The Jackson Laboratory Partner
shared by 4 orgs
U.S. Food and Drug Administration Government
shared by 4 orgs
Boston Children’s Hospital Partner
shared by 3 orgs
Centers for Disease Control and Prevention Government
shared by 3 orgs
Chan Zuckerberg Initiative Funder
shared by 3 orgs