Dup 15q Alliance
Public records show a registered, tax-exempt organization in good standing.
What it says it does
DUP15Q ALLIANCE EMPOWERS INDIVIDUALS LIVING WITH DUP15Q SYNDROME AND OTHER RELATED RARE DISEASES TO REACH THEIR FULL POTENTIAL BY ADVANCING BREAKTHROUGH RESEARCH AND LIFE-CHANGING THERAPEUTIC TREATMENTS, SUPPORTING FAMILIES AFFECTED BY DUP15Q, AND PROMOTING ADVOCACY. AS THE ONLY PATIENT ADVOCACY GRUP FOCUSED ON DUPLICATION 15Q SYNDROME, OUR ORGANIZATION IS DEVOTED TO ADVANCING RESEARCH INTO THE SYNDROME, SUPPORTING AND PROMOTING THE WORK OF SCIENTISTS, CLINICIANS, AND DRUG DEVELOPMENT COMPANIES IN THE SEARCH FOR TREATMENTS THAT WILL ALLEVIATE THE SERIOUS AND MULTIPLE SYMPTOMS OF THE DISORDER. WE ALSO WORK TO EDUCATE FAMILIES ABOUT THE SYNDROME, SUPPORTING THEM WITH INFORMATION, AND CONNECTING FAMILIES TOGETHER FROM THE DAY THEY FIRST REGISTER WITH US, SO THAT THEY CAN SHARE INFORMATION AND SUPPORT EACH OTHER. WE OFFER FAMILIES OPPORTUNITIES TO EDUCATE THEIR OWN FRIENDS AND FAMILIES AND THEIR COMMUNITIES ABOUT DUPLICATION 15Q SYNDROME, RAISING AWARENESS ABOUT THIS RARE CONDITION.
- Income
- $7.0 million
- Spending
- $1.5 million
- Spent on programs
- 80%
- Reserves
- 8.8 months of spending
- Largest source of income
- donations and private grants, 94%
- Employees
- 6
- Volunteers
- 10
- Highest pay
- $125,000, executive di
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: 93 out of 100. Higher than 72% of charities in its peer group (diseases, $1m to $10m).
Reserves
28 of 35Spendable reserves would cover 8.8 months of spending.
Debt
20 of 20It owes 1% of what it owns.
Living within its means
15 of 15Income exceeded spending by 78% of income.
Income trend
15 of 15Income rose 612% on the year before.
Spending floor
15 of 1580% of spending went to programs and raising each dollar of donations cost 2 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: 95 out of 100. Higher than 55% of charities in its peer group (diseases, $1m to $10m).
Independent board
25 of 2511 of 11 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
0 of 5Reports no independent review process for its chief executive's pay.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports 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 (3)
- $708,642 spent. SCIENTIFIC AND CLINICAL INITIATIVES: THE DUP15Q ALLIANCE STANDS AT THE FOREFRONT OF COLLABORATIVE EFFORTS WITH STAKEHOLDERS IN ACADEMIC, CLINICAL, AND PHARMACEUTICAL SPACES TO ADVANCE RESEARCH INTO DUP15Q SYNDROME. IN 2025, WE FINANCIALLY SUPPORTED PARTNERSHIPS WITH TWO DIFFERENT DRUG DEVELOPMENT COMPANIES WORKING SPECIFICALLY ON TARGETED GENETIC TREATMENTS FOR DUP15Q SYNDROME. ADDITIONALLY, WE ALSO FUNDED AND AWARDED A RESEARCH GRANT TO AN ACADEMIC LAB STUDYING ONE OF THE COMPANIES' THERAPEUTIC CANDIDATES. WE DIRECTED DONATIONS TO CONTINUE A SINGLE-SITE NATURAL HISTORY STUDY INITIATED IN 2024, RECRUITING FAMILIES TO PROVIDE DATA AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q AND HOW SYMPTOMS CHANGE OVER TIME. FURTHERMORE, WE WORKED TO EXPAND THE NATURAL HISTORY STUDY TO ENCOMPASS INDIVIDUALS AT OUR FAMILY CONFERENCE, AN UNDERTAKING THAT WIDENED THE ABILITY FOR OUR COMMUNITY TO PARTICIPATE IN THIS PIVOTAL STUDY. OUR BIENNIAL FAMILY CONFERENCE SAW OVER 500 MEMBERS OF THE DUP15Q SYNDROME COMMUNITY CONVENE IN INDIANAPOLIS TO CONNECT AND LEARN ABOUT WAYS THE ALLIANCE CAN SUPPORT THEM. SOME OF THE MAIN FOCUSES WERE RESEARCH, NATURAL HISTORY STUDIES, AND CLINICAL TRIALS ON THE HORIZON. WE SUPPORTED A TEAM OF COMBINEDBRAIN RESEARCHERS AT OUR CONFERENCE WHO COLLECTED BLOOD SAMPLES FROM AFFECTED INDIVIDUALS AND THEIR FAMILY MEMBERS TO SUPPORT ONGOING AND FUTURE DUP15Q RESEARCH PROJECTS. CLINICS - WE PROVIDED SUPPORT TO OUR NETWORK OF 15 CLINICS THROUGH PER- PATIENT PAYMENTS TO OFFSET COSTS OF CARE. WE ALSO SUPPORTED OUR FAMILIES THROUGH TRAVEL GRANTS AND SPECIALIZED EMERGENCY CONSULTATIONS FOR FAMILIES IN CRISIS. DUP15Q CLINICS CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING DUP15Q SYNDROME. OUR CLINICAL COLLABORATION WITH THE ANGELMAN SYNDROME FOUNDATION ALLOWS US TO EXPAND OUR CLINICAL FOOTPRINT, IMPROVE ACCESS TO CARE, AND BRING TOGETHER A LARGER GROUP OF MEDICAL AND RESEARCH PROFESSIONALS AROUND THE WORLD. SCIENTIFIC AND CLINICAL INITIATIVES: THE DUP15Q ALLIANCE STANDS AT THE FOREFRONT OF COLLABORATIVE EFFORTS WITH STAKEHOLDERS IN ACADEMIC, CLINICAL, AND PHARMACEUTICAL SPACES TO ADVANCE RESEARCH INTO DUP15Q SYNDROME. IN 2025, WE FINANCIALLY SUPPORTED PARTNERSHIPS WITH TWO DIFFERENT DRUG DEVELOPMENT COMPANIES WORKING SPECIFICALLY ON TARGETED GENETIC TREATMENTS FOR DUP15Q SYNDROME. ADDITIONALLY, WE ALSO FUNDED AND AWARDED A RESEARCH GRANT TO AN ACADEMIC LAB STUDYING ONE OF THE COMPANIES' THERAPEUTIC CANDIDATES. WE DIRECTED DONATIONS TO CONTINUE A SINGLE-SITE NATURAL HISTORY STUDY INITIATED IN 2024, RECRUITING FAMILIES TO PROVIDE DATA AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q AND HOW SYMPTOMS CHANGE OVER TIME. FURTHERMORE, WE WORKED TO EXPAND THE NATURAL HISTORY STUDY TO ENCOMPASS INDIVIDUALS AT OUR FAMILY CONFERENCE, AN UNDERTAKING THAT WIDENED THE ABILITY FOR OUR COMMUNITY TO PARTICIPATE IN THIS PIVOTAL STUDY. OUR BIENNIAL FAMILY CONFERENCE SAW OVER 500 MEMBERS OF THE DUP15Q SYNDROME COMMUNITY CONVENE IN INDIANAPOLIS TO CONNECT AND LEARN ABOUT WAYS THE ALLIANCE CAN SUPPORT THEM. SOME OF THE MAIN FOCUSES WERE RESEARCH, NATURAL HISTORY STUDIES, AND CLINICAL TRIALS ON THE HORIZON. WE SUPPORTED A TEAM OF COMBINEDBRAIN RESEARCHERS AT OUR CONFERENCE WHO COLLECTED BLOOD SAMPLES FROM AFFECTED INDIVIDUALS AND THEIR FAMILY MEMBERS TO SUPPORT ONGOING AND FUTURE DUP15Q RESEARCH PROJECTS. CLINICS - WE PROVIDED SUPPORT TO OUR NETWORK OF 15 CLINICS THROUGH PER- PATIENT PAYMENTS TO OFFSET COSTS OF CARE. WE ALSO SUPPORTED OUR FAMILIES THROUGH TRAVEL GRANTS AND SPECIALIZED EMERGENCY CONSULTATIONS FOR FAMILIES IN CRISIS. DUP15Q CLINICS CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING DUP15Q SYNDROME. OUR CLINICAL COLLABORATION WITH THE ANGELMAN SYNDROME FOUNDATION ALLOWS US TO EXPAND OUR CLINICAL FOOTPRINT, IMPROVE ACCESS TO CARE, AND BRING TOGETHER A LARGER GROUP OF MEDICAL AND RESEARCH PROFESSIONALS AROUND THE WORLD.
- $104,372 spent. EDUCATION AND OUTREACH: SCIENCE SYMPOSIUM THIS YEAR WE CO-HOSTED 275 RESEARCHERS, CLINICIANS, AND INDUSTRY MEMBERS FROM AROUND THE WORLD AT THE DUP15Q ALLIANCE/ANGELMAN SYNDROME FOUNDATION SCIENCE SYMPOSIUM IN JULY. THE EVENT INCLUDED 33 PRESENTERS AND 11 POSTERS, FOSTERING COLLABORATION, SHARING INSIGHTS, AND DRIVING FORWARD NEW APPROACHES TO IMPROVING CARE AND ADVANCING RESEARCH FOR 15Q DISORDERS.
- $409,951 spent. FAMILY SUPPORT IN 2025, DUP15Q ALLIANCE CONTINUED TO INCREASE PROGRAMMING TO SUPPORT INDIVIDUALS, THEIR FAMILIES AND CAREGIVERS, AS WELL AS EXTENDED SUPPORTERS. IN THE SPRING, WE LAUNCHED A REGIONAL REPRESENTATIVE PROGRAM TO PROVIDE A LOCAL CONTACT FOR DUP15Q ALLIANCE FAMILIES IN THE US. WE CURRENTLY HAVE 28 REPRESENTATIVES THAT NOT ONLY PROVIDE SUPPORT AND INFORMATION, BUT ALSO HOSTED MULTIPLE LOCAL GATHERINGS FOR DUP15Q FAMILIES TO MEET. THESE REPRESENTATIVES ARE SUPPORTED BY THE FAMILY SUPPORT MANAGER THROUGH QUARTERLY VIRTUAL MEETINGS AND QUARTERLY INFORMATIVE NEWSLETTERS THAT HELP EMPOWER THE TEAM TO ASSIST THEIR FAMILIES. WE FUNDED LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS SO FAMILIES IN CRISIS COULD ACCESS HELP AT NO COST. OUR FAMILY SUPPORT MANAGER PERSONALLY REACHES OUT TO NEWLY DIAGNOSED FAMILIES, GIVING THEM PERSONAL SUPPORT AND CONNECTING THEM TO THEIR COMMUNITY. IN 2025, WE HAD A RECORD NUMBER OF PARENTS ATTENDING A VARIETY OF MONTHLY VIRTUAL CONNECTION CALLS THAT ARE OFFERED THROUGHOUT EACH MONTH. THESE CALLS HELP FORM FRIENDSHIPS AMONG PARENTS WITH CHILDREN WITH DUP15Q SYNDROME, AND GIVE THEM A SAFE SPACE TO LEARN FROM ONE ANOTHER. AS A CONFERENCE YEAR, THERE WERE ONLY 2 BELIEVE FUNDRAISING WALKS - HOWEVER, THEY STILL GAVE FAMILIES THE OPPORTUNITY TO GET TOGETHER, EDUCATE FAMILY AND FRIENDS, AND RAISE FUNDS TO SUPPORT OUR MISSION. OTHER PROGRAMS WERE MAINTAINED, SUCH AS THE COMPASSION EXPERIENCE, VIP KITS, AND THE FAMILIES IN CRISIS/WRAPPED IN LOVE PROGRAM. FAMILY SUPPORT IN 2025, DUP15Q ALLIANCE CONTINUED TO INCREASE PROGRAMMING TO SUPPORT INDIVIDUALS, THEIR FAMILIES AND CAREGIVERS, AS WELL AS EXTENDED SUPPORTERS. IN THE SPRING, WE LAUNCHED A REGIONAL REPRESENTATIVE PROGRAM TO PROVIDE A LOCAL CONTACT FOR DUP15Q ALLIANCE FAMILIES IN THE US. WE CURRENTLY HAVE 28 REPRESENTATIVES THAT NOT ONLY PROVIDE SUPPORT AND INFORMATION, BUT ALSO HOSTED MULTIPLE LOCAL GATHERINGS FOR DUP15Q FAMILIES TO MEET. THESE REPRESENTATIVES ARE SUPPORTED BY THE FAMILY SUPPORT MANAGER THROUGH QUARTERLY VIRTUAL MEETINGS AND QUARTERLY INFORMATIVE NEWSLETTERS THAT HELP EMPOWER THE TEAM TO ASSIST THEIR FAMILIES. WE FUNDED LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS SO FAMILIES IN CRISIS COULD ACCESS HELP AT NO COST. OUR FAMILY SUPPORT MANAGER PERSONALLY REACHES OUT TO NEWLY DIAGNOSED FAMILIES, GIVING THEM PERSONAL SUPPORT AND CONNECTING THEM TO THEIR COMMUNITY. IN 2025, WE HAD A RECORD NUMBER OF PARENTS ATTENDING A VARIETY OF MONTHLY VIRTUAL CONNECTION CALLS THAT ARE OFFERED THROUGHOUT EACH MONTH. THESE CALLS HELP FORM FRIENDSHIPS AMONG PARENTS WITH CHILDREN WITH DUP15Q SYNDROME, AND GIVE THEM A SAFE SPACE TO LEARN FROM ONE ANOTHER. AS A CONFERENCE YEAR, THERE WERE ONLY 2 BELIEVE FUNDRAISING WALKS - HOWEVER, THEY STILL GAVE FAMILIES THE OPPORTUNITY TO GET TOGETHER, EDUCATE FAMILY AND FRIENDS, AND RAISE FUNDS TO SUPPORT OUR MISSION. OTHER PROGRAMS WERE MAINTAINED, SUCH AS THE COMPASSION EXPERIENCE, VIP KITS, AND THE FAMILIES IN CRISIS/WRAPPED IN LOVE PROGRAM.
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
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.
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.
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.
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.
How long has it been tax-exempt? Passed.
Recognized by the IRS since August 2004.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
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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