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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
23
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%). The field's most common shared approach is "Venture Philanthropy Model", run by 18 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% · 44 orgs
who's here

Organizations in this field · 44

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.

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
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
22
1
2
Research-Advocacy Integration
15
Peer-Led Support
5
1
Patient-Centered Research Acceleration
6
Peer-Led Holistic Support
6
1
1
Comprehensive Family Support
4
Story-Based Engagement
3
Collective Intelligence Systems
3
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