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THE VIRTUAL CENTER FOR VELO-CARDIO- FACIAL SYNDROME INC
MANLIUS, NY · EIN 454805875 · Form 990 · FY2024 · NTEE E70 · Health Care · Small ($100K-$1M)
revenue
$291K
expenses
$284K
net assets
$245K
employees
0
volunteers
8
program ratio
64%
mission · from form 990

THE CORPORATION WILL PROVIDE FREE CONSULT & INFORMATION SERVICES TO FAMILIES OF INDIVIDUALS OR INDIVIDUALS WITH VELO-CARDIO-FACIAL SYNDROME (VCFS), CRANIOFACIAL DISORDERS AND GENETIC SYNDROMES AND THE CLINICIANS WHO ARE TREATING PEOPLE WITH THESE DISORDERS IN ORDER TO PROVIDE THEM WITH THE LATEST INFORMATION ABOUT THEIR DISORDERS, RELEVANT RESEARCH AND TREATMENT OUTCOMES. THE ORGANIZATION WILL PROVIDE A FORUM FOR DISCUSSION OF THE PROBLEMS, TREATMENTS, AND RECENT ADVANCEMENTS ASSOCIATED WITH VCFS, CRANIOFACIAL DISORDERS, GENETIC SYNDROMES AND THEIR MANAGEMENT. THESE SERVICES WILL BE PROVIDED AT NO COST TO THOSE SEEKING INFORMATION AND WILL SUPPORTED BY CHARITABLE DONATIONS.

profile · synthesized from sources

Nonprofit organization providing free information and consultation services to individuals and families affected by velocardiofacial syndrome (VCFS), craniofacial disorders, and genetic syndromes, as well as the clinicians who treat them. Offers access to current research, treatment outcomes, and a forum for discussion on management of these conditions. Services are delivered remotely and supported by charitable donations.

named programs · 2 · from sources

What they call their work

Free Consultation & Information Services
Provides no-cost consultation and up-to-date information on VCFS, craniofacial disorders, and genetic syndromes to families, individuals, and clinicians.
Research & Treatment Information Forum
Offers a platform for discussion of recent advancements, treatment outcomes, and clinical management strategies related to VCFS and associated conditions.
activities · 1 group

What they do

  • Familial Support for Rare Genetic Conditions 2 activities
    • Hosting discussion forums
      Hosts a forum for discussion on problems, treatments, and recent advancements related to velo-cardio-facial syndrome, craniofacial disorders, genetic syndromes, and their management.
    • Providing free consultation and information services
      Offers free consultation and information to families and clinicians about velo-cardio-facial syndrome, craniofacial disorders, and genetic syndromes, including updates on research and treatment outcomes.
financials · form 990 · fy2024
revenue
Total revenue$291K
Contributions & grants$291K100%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$284K
Program expenses64%
Admin / overhead6%
Fundraising29%
Salaries & benefits$0
Grants paid out$0
Largest expense lineProfessional Fees
balance sheet
Total assets$249K
Cash$240K
Investments$0
Liabilities$4K
Net assets$245K
Liquid reserves10.1 mo
5 years on record · 2020–2024 · YoY revenue +32.9%
leadership · form 990 part vii · fy2024

Who runs it

board members · 4
  • ADAM SHPRINTZEN — BOARD MEMBER
  • DEBORAH MENTER — BOARD MEMBER
  • KAREN J GOLDING-KUSHNER — BOARD MEMBER
  • WILLIAM D GRAF MD — BOARD MEMBER
strategies · 2

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Information Dissemination for Improved Management
    methodology: information_dissemination
    By providing free access to current medical and research information, the organization improves understanding and clinical management of velo-cardio-facial syndrome, because informed families and clinicians can make better health decisions.
  • Peer and Professional Knowledge Exchange
    methodology: peer_support_and_knowledge_exchange
    By facilitating discussion forums among peers and professionals, the organization accelerates the sharing of treatment advancements and lived experiences, because collective knowledge improves care practices and patient support.