AS FUNDER ← edit slice ·
the field for →

Rare Disease Research Funding and Coordination

01 Rare Disease Research Funding and Coordination · 12 edit slice
3
orgs
12
activities
2
strategies
AZ
epicenter
the opening take
This slice touches 3 organizations and 12 activities — CARDIO-FACIO-CUTANEOUS INTERNATIONAL, ALPORT SYNDROME FOUNDATION, Shay Emma Hammer Research Foundtion and others. Activity concentrates in Arizona (100%). The field's most common shared approach is "Diagnostic Precision First", run by 1 orgs.
CARDIO-FACIO-CUTANEOUS INTERNATIONAL and ALPORT SYNDROME FOUNDATION hold roughly a third of all activity — know those first.
pull-quote · for funders
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
Arizona 100% · 3 orgs
who's here

organizations in this field · 3

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.

Kidney Foundation of Canada 1
Foundation
National Institute of Diabetes and Digestive and Kidney Disease 1
Foundation
Scutero Family Foundation 1
Foundation
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
Diagnostic Precision First
6
Privacy-Preserving Community Mapping
6
who works with whom

named partnerships · coalitions · networks

Entities these orgs explicitly call out as partners, coalition members, or networks. Unlike the strategy-sharing graph below (which is inferred from shared approaches), these are relationships the orgs claim on their own sites.

University of Minnesota Partner
shared by 2 orgs
University of Utah Partner
shared by 2 orgs
American College of Medical Genetics and Genomics Partner
shared by 1 org
Ann & Robert H. Lurie Children’s Hospital of Chicago Partner
shared by 1 org
Arizona Public Media Partner
shared by 1 org
Arnold and Smith Law PLLC Partner
shared by 1 org
BIO5 Institute Partner
shared by 1 org
Boston Children’s Hospital Partner
shared by 1 org
Bricktown Parking Inc. Partner
shared by 1 org
Caitlin, Carter, MD Partner
shared by 1 org
Children’s Hospital of Wisconsin Partner
shared by 1 org
Children’s National Medical Center Partner
shared by 1 org
Cincinnati Children’s Hospital Medical Center Partner
shared by 1 org
Costello Kids Partner
shared by 1 org
Dr. A. Cecil Alport Government
shared by 1 org
Dr. Bradley Warady Partner
shared by 1 org
where the field connects

strategy-sharing network

Inferred from shared theories of action: each line connects an org to a strategy it runs. Organizations that share many strategies cluster through the same nodes — funders can spot the field's structural bridges.

funder shortlist · top 5

Orgs that combine the highest activity counts with the broadest strategy reach — the default entry points for a funder diligencing this field.

  1. #01 CARDIO-FACIO-CUTANEOUS INTERNATIONAL AZ · 6 · shares w/ 0
  2. #02 ALPORT SYNDROME FOUNDATION INC AZ · 4 · shares w/ 0
  3. #03 Shay Emma Hammer Research Foundtion AZ · 2 · shares w/ 0