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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
0
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%).
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

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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
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