2026 Applications
The work you’re doing matters. Across the rare disease community, organizations are creating meaningful change every day. If your work is supporting patients, caregivers, or advancing awareness, we invite you to apply for the RAREis Community Grant and share the impact you’re making.
Progress in rare disease does not happen in isolation. It is driven by organizations working every day to support patients, educate communities, and advocate for change.
Across the rare disease landscape, many organizations are working to address urgent and often overlooked needs. From improving access to resources and education to supporting patients and families through complex care journeys, these efforts play a critical role in strengthening the broader ecosystem.
The RAREis Community Grant exists to support these organizations at key moments—helping them expand their reach, deepen their impact, and bring their work to more people who need it.
Supporting the Organizations Moving Rare Forward
Helping fund initiatives focused on education, support, and awareness
Elevating organizations working across a wide range of rare diseases
Amplifying community-led solutions that address real-world challenges
EXPLORE THE ORGANIZATIONS MAKING AN IMPACT
1
Angelman Syndrome Foundation
Angelman Syndrome
Aurora, IL
2
Avery's Hope
Rare and Ultrarare Pediatric GI
New Hope, PA
3
CACNA1A Foundation
CACNA1A and genetic variants
Norwalk, CT
4
CFC International
Cardiofaciocutaneous syndrome
Largo, FL
5
Coffin-Siris Syndrome Foundation
Coffin-Siris Syndrome
Kirkland, WA
6
CureGRIN Foundation
GRI Disorders
Boulder, CO
7
Hope in Focus, Inc.
Leber congenital amaurosis
Ledyard, CT
8
International Pemphigus & Pemphigoid Foundation
Pemphigus/Pemphigoid
Roseville, CA
9
MitoAction
Mitochondrial Disease
Novi, MI
10
Neev Kolte & Brave Ronil Foundation
Diffuse Intrinsic Pontine Glioma
Pleasanton, CA
11
PAP Alliance
Pulmonary Alveolar Proteinosis
Colorado Springs, CO
12
PC Project
Pachyonychia Congenita
Holladay, UT
13
Rory Belle Foundation
NARS1 disorder
Denver, CO
14
United MSD Foundation
Multiple Sulfatase Deficiency
Biloxi, MS
1
ALD Alliance
Adrenoleukodystrophy/RUSP diseases
Brooklyn, NY
2
Association for Creatine Deficiencies
Cerebral Creatine Deficiency Syndromes
Carlsbad, CA
3
ASXL Rare Research Endowment Foundation
ASXL-related disorders
Gorham, ME
4
Autoinflammatory Alliance
Rare Autoinflammatory Diseases
San Francisco, CA
5
Avery's Hope
Rare and Ultrarare Pediatric GI
New Hope, PA
6
CACNA1A Foundation
CACNA1A and genetic variants
Norwalk, CT
7
Cheyanna Foundation for Children
Disease agnostic
Austin, TX
8
CLOVES Syndrome Community
CLOVES Syndrome
Browns Point, WA
9
Courageous Parents Network
Disease agnostic
Newton, MA
10
CSNK2A1 Foundation
Okur-Chung Neurodevelopmental Syndrome
Burlingame, CA
11
Cure VCP Disease, Inc.
VCP Disease
Warner Robins, GA
12
CureGRIN Foundation
GRI Disorders
Boulder, CO
13
FD/MAS Alliance
Fibrous Dysplasia, McCune-Albright syndrome
Bethesda, MD
14
Glanzmann’s Research Foundation
Glanzmann Thrombasthenia
Somerville, MA
15
Global Foundation for Peroxisomal Disorders
Peroxisomal Disorders
Tulsa, OK
16
Hope for HIE
Neonatal Hypoxic Ischemic Encephalopathy
Batavia, IL
17
Hope for Hypothalamic Hamartomas
Hypothalamic Hamartomas
Eagle, ID
18
Hope in Focus, Inc.
Leber congenital amaurosis
Ledyard, CT
19
Hypertrophic Olivary Degeneration Association
Hypertrophic Olivary Degeneration
Gilbert, AZ
20
Indo US Organization for Rare Diseases
Disease agnostic
Herndon, VA
21
International Sacral Agenesis/Caudal Regression Association
Sacral agenesis
Lake Frederick, VA
22
Jansen de Vries Syndrome Foundation
Jansen de Vries Syndrome
Natick, MA
23
Jett Foundation, Inc.
Duchenne Muscular Dystrophy
Norwell, MA
24
KAT6 Foundation
KAT6A Syndrome
Chevy Chase, MD
25
Kinslow TUBB4A Foundation
TUBB4A-related conditions
Argyle, TX
26
Lennox-Gastaut Syndrome Foundation
Lennox-Gastaut Syndrome
San Diego, CA
27
Les Turner ALS Foundation
Amyotrophic lateral sclerosis (ALS)
Skokie, IL
28
Lipodystrophy United
Lipodystrophy
Los Lunas, NM
29
MAC Angels Foundation
Amyotrophic lateral sclerosis (ALS)
Larchmont, NY
30
Mowat Wilson Syndrome Foundation
Mowat-Wilson Syndrome
Rhinelander, WI
31
Myhre Syndrome Foundation
Myhre Syndrome
Richardson, TX
32
Prader-Willi Syndrome Association
Prader-Willi Syndrome
Brandon, FL
33
Project FAVA
Fibro-adipose vascular anomalies
Irvine, CA
34
PTEN Hamartoma Tumor Syndrome Foundation
PTEN Hamartoma Tumor Syndrome
Huntsville, AL
35
RareAI Institute
Single gene defect rare disease agnostic
Middletown, DE
36
Rory Belle Foundation
NARS1 disorder
Denver, CO
37
Sisters’ Hope Foundation
Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia
Melbourne, FL
38
SPATA Foundation
SPATA5 and SPATA5L1 Related Genetic Disorders
Palm Coast, FL
39
TANGO2 Research Foundation
TANGO2 Deficiency Disorder
Hadlyme, CT
40
Team Telomere
Telomere Biology Disorders
Missoula, MT
41
The E.WE Foundation
Trisomy 18
Huntsville, AL
42
The EHE Foundation
Epithelioid hemangioendothelioma
Hobart, WI
43
United MSD Foundation
Multiple Sulfatase Deficiency
Biloxi, MS
44
Upequity
Disease agnostic
Menomonee Falls, WI
1
Avery's Hope
Rare and Ultrarare Pediatric GI
New Hope, PA
2
Beck-Fahrner Syndrome Foundation
Beck-Fahrner Syndrome
Anoka, MN
3
Brighter Hope Foundation
Generalized Arterial Calcification of Infancy
Argyle, TX
4
CACNA1A Foundation
CACNA1A and genetic variants
Norwalk, CT
5
Chordoma Foundation
Chordoma
Durham, NC
6
EBF3 HADDS Foundation
EBF3 HADD Syndrome
St. Louis, MO
7
Erdheim-Chester Disease Global Alliance
Erdheim-Chester Disease
DeRidder, LA
8
Foundation for Sarcoidosis Research
Sarcoidosis
Chicago, IL
9
Glanzmann’s Research Foundation
Glanzmann Thrombasthenia
Somerville, MA
10
Hypertrophic Olivary Degeneration Association
Hypertrophic Olivary Degeneration
Gilbert, AZ
11
Indo US Organization for Rare Diseases
Disease agnostic
Herndon, VA
12
Jansen de Vries Syndrome Foundation
Jansen de Vries Syndrome
Natick, MA
13
Koolen de-Vries Syndrome Foundation
Koolen de-Vries Syndrome
Wilmington, NC
14
Lennox-Gastaut Syndrome Foundation
Lennox-Gastaut Syndrome
San Diego, CA
15
MEPAN Foundation
MEPAN Syndrome
Corte Madera, CA
16
Osteogenesis Imperfecta Foundation
Osteogenesis Imperfecta
Gaithersburg, MD
17
Pediatric Epilepsy Surgery Alliance
Rare Pediatric Epilepsy Diseases
Los Angeles, CA
18
Progressive Familial Intrahepatic Cholestasis Network
Progressive Familial Intrahepatic Cholestasis
Stanton, KY
19
Project FAVA
Fibro-adipose vascular anomalies
Irvine, CA
20
Recurrent Respiratory Papillomatosis Foundation
Recurrent Respiratory Papillomatosis
Lawrenceville, NJ
21
Rory Belle Foundation
NARS1 disorder
Denver, CO
22
SHINE Syndrome Foundation
DLG4, PSD-95 and SHINE Syndrome
Pleasant Grove, UT
23
Soft Bones, Inc.
Hypophosphatasia
Parsipanny, NJ
24
Spinal Leak CSF Foundation
Intracranial Hypotension
Spokane, WA
25
TANGO2 Research Foundation
TANGO2 Deficiency Disorder
Hadlyme, CT
26
TBX4Life
TBX4 Syndrome
Nashville, TN
27
The E.WE Foundation
Trisomy 18
Huntsville, AL
1
11q Research and Resource Group
Jacobsen Syndrome and 11q disorders
Canton, GA
2
ALD Alliance
Adrenoleukodystrophy/RUSP diseases
Brooklyn, NY
3
Chelsea’s Hope Lafora Children Research Fund
Lafora Disease
Lexington, KY
4
Chordoma Foundation
Chordoma
Durham, NC
5
Global Foundation for Peroxisomal Disorders
Peroxisomal Disorders
Tulsa, OK
6
Hope for HIE
Neonatal Hypoxic Ischemic Encephalopathy
Batavia, IL
7
Jansen de Vries Syndrome Foundation
Jansen de Vries Syndrome
Natick, MA
8
Koolen de-Vries Syndrome Foundation
Koolen de-Vries Syndrome
Wilmington, NC
9
Lennox-Gastaut Syndrome Foundation
Lennox-Gastaut Syndrome
San Diego, CA
10
Malan Syndrome Foundation
Malan Syndrome
Old Bridge, NJ
11
Prader-Willi Syndrome Association
Prader-Willi Syndrome
Brandon, FL
12
PTEN Hamartoma Tumor Syndrome Foundation
PTEN Hamartoma Tumor Syndrome
Huntsville, AL
13
RASopathies Network
RASopathy Syndromes
Davis, CA
14
Rays for Rare
Pediatric disease agnostic
Eagle, ID
15
SHINE Syndrome Foundation
DLG4, PSD-95 and SHINE Syndrome
Pleasant Grove, UT
16
TANGO2 Research Foundation
TANGO2 Deficiency Disorder
Hadlyme, CT
17
The E.WE Foundation
Trisomy 18
Huntsville, AL
18
The Life Raft Group
Gastrointestinal Stromal Tumors
Wayne, NJ
19
The SHANK2 Foundation
SHANK2 genetic disorders
Miami, FL
20
The Stiff Person Syndrome Research Foundation
Stiff Person Syndrome
Bethesda, MD
21
United MSD Foundation
Multiple Sulfatase Deficiency
Biloxi, MS
22
Virginia Sickle Cell Network
Sickle Cell Disease
Virginia Beach, VA
