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KCNMA1 CHANNELOPATHY INTERNATIONAL ADVOCACY FOUNDATION
NEW YORK, NY · EIN 834532605 · Form 990EZ · FY2023 · NTEE G80 · Voluntary Health Associations · Micro (<$100K)
revenue
$0
expenses
$0
net assets
$1K
employees
—
mission · from form 990

KFIAF IS A PATIENT ADVOCACY GROUP PROVIDING EDUCATION ABOUT THE RARE DISEASE KCNMA1 LINKED CHANNELOPATHY TO FAMILIES AND HEALTHCARE WORKERS, AS WELL AS HELPING TO PROMOTE AND FACILITATE RESEARCH IN THIS AREA. WE COMMUNICATE THROUGH WEBSITE, EMAIL, AND DIRECT PERSONAL COMMUNICATIONS TO THOSE WITH NEW DIAGNOSES. WE MAINTAIN AN INTERNET FORUM FOR FAMILIES AND PROVIDERS TO SHARE THEIR EXPERIENCES.

profile · synthesized from sources

KCNMA1 Channelopathy International Advocacy Foundation is a patient advocacy group focused on the rare genetic disorder KCNMA1-linked channelopathy. The organization provides education and support to affected families and healthcare providers, facilitates research, and maintains an online forum for sharing experiences. It operates nationally with a focus on connecting patients and professionals.

named programs · 3 · from sources

What they call their work

Online Patient Forum
Maintains an internet-based platform for families and healthcare providers to share experiences and support
Patient and Family Education
Provides informational resources and direct communications to families newly diagnosed with KCNMA1-linked channelopathy
Research Facilitation
Supports and promotes scientific research into KCNMA1-linked channelopathy through networking and information sharing
activities · 1 group

What they do

  • Familial Support for Rare Genetic Conditions 3 activities
    • Maintaining an online forum for community engagement
      Operates an internet forum where families and healthcare providers can share experiences and information related to KCNMA1-linked channelopathy.
    • Providing education about KCNMA1-linked channelopathy
      Offers educational resources and materials about KCNMA1-linked channelopathy to families and healthcare professionals to improve understanding and care.
    • Supporting newly diagnosed individuals through direct outreach
      Provides direct personal, email, and website-based communication support to individuals recently diagnosed with KCNMA1-linked channelopathy.
financials · form 990EZ · fy2023
revenue
Total revenue$0
Contributions & grants$0—
Program service revenue$0—
Investment income$0—
Other revenue$0
expenses
Total expenses$0
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$0
Grants paid out$0
balance sheet
Total assets$1K
Cash—
Investments—
Liabilities—
Net assets$1K
4 years on record · 2020–2023
leadership · form 990 part vii · fy2023

Who runs it

board members · 1
  • MICHAEL KRUER — BOARD MEMBER
strategies · 1

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.

  • Patient and Family Education Integrated with Research Facilitation
    methodology: patient-education-and-research-facilitation
    By educating patients and families and simultaneously facilitating research, the organization advances understanding and improves management of KCNMA1 channelelopathy, because informed patients contribute more effectively to research and treatment development.