RAREis™ Community Grant

 

For five years, the RAREis™ Community Grant has supported organizations working to make a difference across the rare disease community. By investing in patient support, education, awareness and community-driven initiatives, the program helps organizations bring meaningful ideas to life and expand the impact of their work.

 

Information about the 2027 application cycle will be available next summer, but you can visit Amgen’s Community Investment portal for more information about how to submit a donation request any time.

Learn More

Supporting the Organizations Moving Rare Forward

 

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.

Education

Supporting the Organizations Moving Rare Forward

Education

Helping fund initiatives focused on education, support, and awareness

Education

Elevating organizations working across a wide range of rare diseases

Education

Amplifying community-led solutions that address real-world challenges

EXPLORE THE ORGANIZATIONS MAKING AN IMPACT

Meet the advocacy organizations and initiatives helping
move the rare disease community forward.

map 2025 map 2025

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
map 2024 map 2024

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
map 2023 map 2023

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
map 2022 map 2022

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
amgen pattern blue amgen pattern blue