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116 ORGS · 145 ACTIVITIES · 1 STATES ← back to explorer ·
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Disease-Specific Clinical & Patient Education

Produces and distributes educational resources for healthcare professionals and affected individuals on diagnosis, management, and care of specific rare or chronic neurological and genetic conditions.

what makes this distinct Differentiated by its focus on highly specialized, often rare, medical conditions (e.g., Huntington’s, dysautonomia, ME/CFS) and the creation of targeted clinical tools, patient guides, and professional training materials to address knowledge gaps in both medical and patient communities.

116
organizations
145
activities
0
nested groups
0
strategies
coverage NY 116
NTEE codes
H20ZG19G20
organizations

Organizations in this activity group · 116

showing 20 of 50
#OrganizationStateRevenueActivities
1GLOBAL HEALTHY LIVING FOUNDATION INC
The Global Healthy Living Foundation improves quality of life for people with chronic diseases through education, advocacy, and patient-centered research. It o…
NY$7.2M4
2HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC
Nonprofit dedicated to improving the lives of people with Huntington's disease and their families. Provides educational resources, care guidance, and support s…
NY$10.2M3
3INTERNATIONAL ASSOCIATION FOR CHRONIC FATIGUE SYNDROME-ME
The International Association for Chronic Fatigue Syndrome-ME (IACFS/ME) is a nonprofit organization dedicated to advancing research, clinical care, and unders…
NY$133K3
4LEWY BODY DEMENTIA RESOURCE CENTER OF NEW YORK INC
The Lewy Body Dementia Resource Center of New York is a nonprofit organization founded in 2016 by Norma Loeb to support individuals and families affected by Le…
NY$209K3
5SHARP AGAIN NATURALLY INC DBA SHARP AGAIN
Nonprofit organization based in White Plains, NY, focused on educating the public about cognitive health and preventing dementia through a science-based, multi…
NY$122K3
6THE HEPATITIS C MENTOR AND SUPPORT GROUP INC
The Hepatitis C Mentor and Support Group (HCMSG) provides education, support, and services for people living with Hepatitis C, including those co-infected with…
NY$182K3
7ALS OF UTICA
ALS of Utica supports individuals with amyotrophic lateral sclerosis (ALS) and their families in Central New York. The organization provides emotional and fina…
NY$30K2
8BELOVEDS A NANIA FOUNDATION INC
BELOvEDS, A Nania Foundation Inc. is a nonprofit organization founded in memory of Angelo Nania Jr., who died from complications of vascular Ehlers-Danlos Synd…
NY$34K2
9BREAKTHROUGH T1D
Breakthrough T1D is a nonprofit organization dedicated to accelerating research to cure, prevent, and treat type 1 diabetes (T1D). Founded in 1970 by parents o…
NY$301.7M2
10CARCINOID CANCER FOUNDATION
The Neuroendocrine Cancer Foundation (NCF) supports patients, caregivers, and clinicians affected by neuroendocrine cancer through education, community connect…
NY$253K2
11Cancer Care Inc
Cancer Care Inc provides free support services and resources to help people affected by cancer manage the emotional and practical challenges of diagnosis and t…
NY$22.0M2
12DYSAUTONOMIA INTERNATIONAL INC
DYSAUTONOMIA INTERNATIONAL INC is a nonprofit organization dedicated to increasing awareness of dysautonomia among the medical community and the general public…
NY$1.1M2
13EPILEPSY ASSOCIATION OF WESTERN NEW YORK INC
Nonprofit organization serving individuals and families affected by epilepsy in Western New York. Provides direct services including counseling, family support…
NY$377K2
14FOUNDATION FOR AIRWAY HEALTH
The Foundation for Airway Health raises public awareness about airway-centered disorders (ACD), which can affect breathing, sleep, and overall health across al…
NY$33K2
15HEMOPHILIA ASSOCIATION OF NEW YORK INC
Hemophilia Association of New York supports scientific research toward treatments and cures for hemophilia and related bleeding disorders, while providing educ…
NY$441K2
16HUNTINGTON'S DISEASE SOCIETY OF AMERICA GROUP
Huntington's Disease Society of America Group is dedicated to improving the lives of people with Huntington's disease and their families. The organization prov…
NY$3.2M2
17LD RESOURCES FOUNDATION INC
LD RESOURCES FOUNDATION INC supports individuals with learning disabilities by promoting awareness and access to assistive technologies. The organization highl…
NY$56K2
18LONG ISLAND CENTER FOR TOURETTE AND ASSOCIATED DISORDERS INC
Long Island Center for Tourette and Associated Disorders provides education, support, and outreach for individuals and families affected by Tourette Syndrome a…
NY$222
19MALIGNANT HYPERTHERMIA ASSOCIATION OF THE UNITED STATES INC
The Malignant Hyperthermia Association of the United States (MHAUS) is a nonprofit dedicated to reducing the morbidity and mortality of malignant hyperthermia …
NY$479K2
20NATIONAL BLEEDING DISORDERS FOUNDATION
NATIONAL BLEEDING DISORDERS FOUNDATION (formerly National Hemophilia Foundation) advances care and seeks cures for inheritable blood and bleeding disorders thr…
NY$16.6M2