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Familial Support for Rare Genetic Conditions

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

01 Familial Support for Rare Genetic Conditions · 55 activities edit slice
44
orgs
55
activities
0
strategies
NY
epicenter
the opening take
This slice touches 44 organizations and 55 activities — M-CM NETWORK, KCNMA1 CHANNELOPATHY INTERNATIONAL ADVOCACY FOUNDATION, Project CASK, THE VIRTUAL CENTER FOR VELO-CARDIO- FACIAL SYNDROME 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% · 44 orgs
who's here

Organizations in this field · 44

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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.

CF Christmas Ball 1
Earned
Chan Zuckerberg Initiative 1
Foundation
Estate of Dennis Durfee 1
Foundation
HUNTER'S HOPE FOUNDATION INC 1
Foundation
JCC Chicago 1
Corporate
NORD 1
Foundation
Orphan Disease Center at University of Pennsylvania 1
Government
Prime Medicine 1
Corporate
Simons Searchlight 1
Foundation
Takeda 1
Corporate
Ultragenyx 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 4 orgs
Boston Children's Hospital Partner
shared by 3 orgs
NORD Partner
shared by 3 orgs
The Jackson Laboratory Partner
shared by 3 orgs
Chan Zuckerberg Initiative Funder
shared by 2 orgs
Duke University Medical Center Partner
shared by 2 orgs
Facebook Partner
shared by 2 orgs
Instagram Partner
shared by 2 orgs
Massachusetts General Hospital Partner
shared by 2 orgs
Murdoch Children’s Research Institute Partner
shared by 2 orgs
NORD Network
shared by 2 orgs
NYU Langone Health Partner
shared by 2 orgs
National Institutes of Health Government
shared by 2 orgs
New York University Partner
shared by 2 orgs
Tel Aviv University Partner
shared by 2 orgs
YouTube Partner
shared by 2 orgs