organizations
Organizations in this activity group · 44
showing 20 of 44
| # | Organization | State | Revenue | Activities ↓ | |
|---|---|---|---|---|---|
| 1 | M-CM NETWORK M-CM NETWORK supports individuals affected by macrocephaly-capillary malformation syndrome (M-CM or MCAP), a rare genetic disorder. The organization promotes r… | NY | $29K | 5 | |
| 2 | KCNMA1 CHANNELOPATHY INTERNATIONAL ADVOCACY FOUNDATION KCNMA1 Channelopathy International Advocacy Foundation is a patient advocacy group focused on the rare genetic disorder KCNMA1-linked channelopathy. The organi… | NY | $0 | 3 | |
| 3 | BAND OF PARENTS INC Band of Parents is a nonprofit organization founded by families affected by neuroblastoma to fund research and support families navigating pediatric cancer tre… | NY | $1.5M | 2 | |
| 4 | CHILD LIFE SOCIETY INC Child Life Society supports individuals and families affected by cystic fibrosis and other genetic lung diseases by providing direct services that improve qual… | NY | $432K | 2 | |
| 5 | Project CASK Inc Project CASK Inc is a nonprofit organization dedicated to accelerating research for treatments and a cure for CASK gene disorders, a rare genetic condition aff… | NY | $207K | 2 | |
| 6 | THE KAT6 FOUNDATION INC The KAT6 Foundation supports individuals and families affected by KAT6A and KAT6B disorders through research funding, patient advocacy, and community support. … | NY | $546K | 2 | |
| 7 | THE VIRTUAL CENTER FOR VELO-CARDIO- FACIAL SYNDROME INC Nonprofit organization providing free information and consultation services to individuals and families affected by velocardiofacial syndrome (VCFS), craniofac… | NY | $291K | 2 | |
| 8 | AEDENS BRIDGE OF HOPE INC AEDENS BRIDGE OF HOPE INC supports families caring for minors with Duchenne Muscular Dystrophy and other physical disabilities. The organization focuses on red… | NY | $0 | 1 | |
| 9 | APS TYPE 1 FOUNDATION The APS Type 1 Foundation supports individuals affected by Autoimmune Polyglandular Syndrome Type 1 (APS Type 1), a rare autoimmune disorder. The organization … | NY | $126K | 1 | |
| 10 | BELIEVE IN A CURE INC Nonprofit dedicated to advancing research and support for individuals with FOXG1 syndrome, a rare neurological disorder. Funds translational research in gene t… | NY | $1.8M | 1 | |
| 11 | BIG HELPING LITTLE INC Nonprofit organization based in Pittsford, NY, dedicated to supporting families of children with rare diseases, genetic disorders, and extensive medical needs.… | NY | $37K | 1 | |
| 12 | BOBBY JONES CHIARI & SYRINGOMYELIA FOUNDATION The Bobby Jones Chiari & Syringomyelia Foundation is a nonprofit organization dedicated to advancing knowledge and public understanding of Chiari malformation,… | NY | $1.2M | 1 | |
| 13 | CCHS Network Inc CCHS Network Inc is a voluntary health association dedicated to supporting patients and families affected by Congenital Central Hypoventilation Syndrome (CCHS)… | NY | $349K | 1 | |
| 14 | DIAMOND BLACKFAN ANEMIA FOUNDATION The Diamond Blackfan Anemia Foundation supports patients and families affected by Diamond Blackfan Anemia Syndrome while advancing research toward better treat… | NY | $499K | 1 | |
| 15 | DYSAUTONOMIA FOUNDATION INC DBA FAMILIAL DYSAUTONOMIA FOUNDATION The Familial Dysautonomia Foundation supports medical care, research, social services, and public education for people affected by or at risk for familial dysa… | NY | $1.6M | 1 | |
| 16 | Down Syndrome Association of the Hudson Valley Support organization serving families of children with Down syndrome in the Hudson Valley region of New York. Provides educational resources, social programs, … | NY | $55K | 1 | |
| 17 | EPILEPSY 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 | $377K | 1 | |
| 18 | FLY WITH ME FUND Nonprofit organization based in Lynbrook, NY, established to support families with children diagnosed with Fragile X syndrome. The organization focuses on rais… | NY | $15K | 1 | |
| 19 | FOXG1 Research Inc FOXG1 Research Inc is a nonprofit organization based in Sands Point, NY, focused on advancing research and finding treatments for FOXG1 Syndrome, a rare geneti… | NY | $6.9M | 1 | |
| 20 | Flower City Down Syndrome Network Flower City Down Syndrome Network supports individuals with Down syndrome and their families in the Rochester, NY area. It connects families with community res… | NY | $55K | 1 |