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North Carolina Center for the Care of Huntingtons Disease Inc

EIN 26-4826165 · Cary, NC

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong90 out of 100GovernanceStrong91 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO IMPROVE THE CARE OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES BY CONNECTING THEM TO MEDICAL CARE AND COMMUNITY SUPPORT. TO INCREASE THE UNDERSTANDING OF HUNTINGTON'S DISEASE IN THE GENERAL COMMUNITY, HEALTHCARE PROVIDERS, HEALTHCARE FACILITIES, AND GOVERNMENT AND CHARITABLE PROGRAMS.

Income
$407,798
Spending
$404,755
Spent on programs
75%
Reserves
9.3 months of spending
Largest source of income
donations and private grants, 94%
Employees
4
Volunteers
63

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 90 out of 100. Higher than 75% of charities in its peer group (community improvement, $250k to $1m).

  • Reserves

    28 of 35

    Spendable reserves would cover 9.3 months of spending.

  • Debt

    20 of 20

    It owes 1% of what it owns.

  • Living within its means

    12 of 15

    Income exceeded spending by 1% of income.

  • Income trend

    15 of 15

    Income rose 4% on the year before.

  • Spending floor

    15 of 15

    75% of spending went to programs and raising each dollar of donations cost 13 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 91 out of 100. Higher than 75% of charities in its peer group (community improvement, $250k to $1m).

  • Independent board

    25 of 25

    10 of 10 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Independent check of accounts

    6 of 15

    Its accounts were not audited or reviewed by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (4)
  1. $42,534 spent. ACCESS TO CARE PROGRAM:1. PATIENT-CENTERED GOAL-DIRECTED CARE NAVIGATION (INCLUDING NEEDS ASSESSMENTS), PATIENT FAMILY EDUCATION, AND ADVOCATING SERVICES, AND OVERCOMING BARRIERS TO CARE2. REFERRALS TO APPROPRIATE SOURCE OF MEDICAL CARE OR NEEDED RESOURCES3. TELEPHONE SUPPORTLOCATION OF ACTIVITY:PRIMARY OFFICE, RALEIGH, NC; SOCIAL WORKER LOCATED IN RALEIGH, NC; CARE NAVIGATOR AVAILABLE BY PHONEPARTNERSHIPS:PARTNERSHIPS WITH HUNTINGTON'S DISEASE (HD) CLINICS AT DUKE UNIVERSITY, UNC CHAPEL HILL, AND WAKE FOREST UNIVERSITY.PURPOSE:TO FACILITATE ENTRY TO MEDICAL CARE BY PERFORMING NEEDS ASSESSMENTS, REFERRAL TO APPROPRIATE SOURCE OF HELP, FOLLOW-UP ON TREATMENT PLAN DEVELOPED DURING HD CLINICS, AND OFFER SUPPORT TO HOME-BOUND FAMILIES.NUMBER OF PERSONS SERVED IN 2025:7679 CLIENT NOTES, REPRESENTING 465 UNIQUE CLIENTS.
  2. $127,601 spent. OUTREACH PROGRAM:1. IMPROVE AWARENESS IN HD FAMILIES2. IMPROVE AWARENESS WITH HEALTHCARE PROVIDERS3. RESOURCE DEVELOPMENTLOCATIONS OF ACTIVITY:RALEIGH, NC; CHARLOTTE, NC; WILMINGTON, NC; GREENVILLE, NC; WINSTON-SALEM, NC; ASHEVILLE, NC.PURPOSE:1. TO INCREASE AWARENESS IN NC HD PATIENTS AND FAMILIES OF HELP AND MEDICAL CARE AVAILABLE.2. TO INCREASE AWARENESS OF HD WITH HEALTHCARE PROVIDERS, HEALTHCARE FACILITIES, AND GOVERNMENT AND CHARITABLE PROGRAMS.3. PARTNERSHIP CREATION WITH EXISTING PROGRAMS THAT PROVIDE SERVICES NEEDED BY HD FAMILIES.OUTREACH METRICS (2025):* NUMBER OF PERSONS THAT OPENED AN EMAIL FROM US IN 2025 - 76,799 TOTAL EMAILS SENT, 49,757 OPENED, OPEN RATE 41% * NUMBER OF MID-YEAR APPEAL LETTERS SENT WITH INFORMATION ABOUT HD REACH: 1,163* NUMBER OF END-OF-YEAR LETTERS WITH INFORMATION ABOUT HD REACH: 1,455* NUMBER OF APPEAL LETTERS SENT IN 2025: 2,618* NUMBER OF OUTREACH POSTCARDS MAILED IN 2025: 300* NUMBER OF INSTAGRAM LIKES IN 2025: 1,561* NUMBER OF FACEBOOK LIKES IN 2025: 1,675
  3. $89,020 spent. EDUCATION PROGRAM - FAMILIES:1. WEBSITE DEVELOPMENT2. SUPPORT GROUP PARTICIPATION3. ANNUAL FAMILY EDUCATION DAY4. SPECIAL TOPICS WORKSHOPSLOCATIONS OF ACTIVITY:RALEIGH, NC; CHARLOTTE, NC; WINSTON-SALEM, NC; GREENVILLE, NC; WILMINGTON, NC; AND ASHEVILLE, NC.PURPOSE:TO EDUCATE FAMILIES ABOUT NEW INITIATIVES IN HD RESEARCH, EDUCATE FAMILIES ABOUT HD REACH PROGRAMS, AND DETAIL RESOURCES AVAILABLE TO PATIENTS AND FAMILIES, AND CREATE OPPORTUNITIES FOR FAMILIES TO MEET AND LEARN FROM OTHER HD FAMILIES. NUMBER OF FAMILY ADVISORY BOARD ATTENDEES: 8 (6 MEETINGS)NUMBER OF BOOK CLUB ATTENDEES: 187 (12 MEETINGS)NUMBER OF GAME OVER CLUB ATTENDEES: 372 (194 MEETINGS)NUMBER OF SUPPORT GROUP ATTENDEES: 333NUMBER OF SUPPORT GROUP MEETINGS - TRIANGLE: 11 (69 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - CHARLOTTE: 11 (375 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - WILMINGTON: 11 (58 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - WINSTON-SALEM: 20 (131 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - ASHEVILLE: 0 (0 ATTENDEES)EDUCATION DAY - 118 IN-PERSON ATTENDEES.
  4. $42,530 spent. EDUCATION PROGRAM - HEALTH CARE PROFESSIONALS:PURPOSE - TO IMPROVE KNOWLEDGE AND MEDICAL CARE OF HD: ITS DIAGNOSIS, TREATMENT, ON-GOING AND FUTURE RESEARCH FINDINGS, AND CREATE A MEETING FORUM FOR KNOWLEDGE EXCHANGE.NUMBER OF MEETINGS/FORUMS IN 2025: 2CLINIC VISITS: 26SKILLED NURSING FACILITY TRAINING: 3CLINIC TRAININGS: 2FIRST RESPONSE TRAININGS: 4RESOURCE TRAININGS: 2HEALTH FAIRS: 2

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since July 2009.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

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