Fragile X-associated primary ovarian insufficiency

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ORPHA:642691OMIM:311360E28.3
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1FDA treatments23Specialists8Treatment centers2Financial resources

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Also known as:

FXPOIFragile X-associated POIFragile X-associated premature ovarian failureFragile X-associated POFPrimary ovarian insufficiency associated with fragile X premutationPOI associated with fragile X premutationPremature ovarian failure associated with fragile X premutationPOF associated with fragile X premutation
Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

2 events
Feb 2026DARZALEX FASPRO: New indication approved
FDAcompleted
Jan 2026DARZALEX FASPRO: New indication approved
FDAcompleted

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

1 available

MEKINIST

trametinib· Novartis Pharmaceuticals Corp.

indicated, in combination with dabrafenib, for the treatment of pediatric patients 1 year of age and older with low-grade glioma (LGG) with a BRAF V600E mutation who require systemic therapy

View Details →FDA Label ↗Patient Assistance ↗

Clinical Trials

View all trials with filters →

No actively recruiting trials found for Fragile X-associated primary ovarian insufficiency at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Fragile X-associated primary ovarian insufficiency community →

Specialists

23 foundView all specialists →
EP
E Scott Sills, MD PhD
Specialist
PI on 1 active trial
HH
Heather Hipp
KAILUA, HI
Specialist
2 Fragile X-associated primary ovarian insufficiency publications
BP
Bonnie Poteet
ATLANTA, GA
Specialist
2 Fragile X-associated primary ovarian insufficiency publications
WE
Whitney Espinel
SALT LAKE CITY, UT
Specialist
1 Fragile X-associated primary ovarian insufficiency publication
TB
Tamara Barcos
Specialist
1 Fragile X-associated primary ovarian insufficiency publication
AB
Aina Borras
Specialist
1 Fragile X-associated primary ovarian insufficiency publication
NA
Nadia Ali
Specialist
3 Fragile X-associated primary ovarian insufficiency publications
EA
Emily G Allen
Specialist
3 Fragile X-associated primary ovarian insufficiency publications
SS
Stephanie L Sherman
Specialist
2 Fragile X-associated primary ovarian insufficiency publications
AS
Alexandra L Singleton
Specialist
2 Fragile X-associated primary ovarian insufficiency publications
HH
Heather S Hipp
KAILUA, HI
Specialist
2 Fragile X-associated primary ovarian insufficiency publications
CB
Cecelia Bellcross
Specialist
1 Fragile X-associated primary ovarian insufficiency publication
MA
Maria Isabel Alvarez-Mora
Specialist
1 Fragile X-associated primary ovarian insufficiency publication
IA
Ines Agusti
Specialist
1 Fragile X-associated primary ovarian insufficiency publication
RW
Robin Wijngaard
Specialist
1 Fragile X-associated primary ovarian insufficiency publication
EM
Estefania Martinez-Barrios
Specialist
1 Fragile X-associated primary ovarian insufficiency publication
SP
Sophie Christin-Maitre, MD, PhD
Specialist
PI on 1 active trial
PJ
Peng Jin
LAS VEGAS, NV
Specialist
2 Fragile X-associated primary ovarian insufficiency publications
KU
Karen Usdin
Specialist
3 Fragile X-associated primary ovarian insufficiency publications
JC
Jonathan Cohen
Specialist
2 Fragile X-associated primary ovarian insufficiency publications
CK
Claudine M Kraan
Specialist
2 Fragile X-associated primary ovarian insufficiency publications
LR
Laia Rodriguez-Revenga
Specialist
2 Fragile X-associated primary ovarian insufficiency publications
AL
Aleksandar Ljubic
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center ↗

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center ↗

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program ↗

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site ↗

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site ↗

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site ↗

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine ↗

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program ↗

UCLA Health

📍 Los Angeles, CA

Financial Resources

2 resources
MEKINIST(trametinib)— Novartis Pharmaceuticals Corp.

TAFINLAR

Novartis Pharmaceuticals Corp.

TAFINLAR Patient Support (Novartis Patient Assistance)

Patient Assistance
Manufacturer Program
Accepting applications

Travel Grants

No travel grants are currently matched to Fragile X-associated primary ovarian insufficiency.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Fragile X-associated primary ovarian insufficiency

No recent news articles for Fragile X-associated primary ovarian insufficiency.

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Fragile X-associated primary ovarian insufficiency

Which specialists treat Fragile X-associated primary ovarian insufficiency?

23 specialists and care centers treating Fragile X-associated primary ovarian insufficiency are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Fragile X-associated primary ovarian insufficiency?

2 patient support programs are currently tracked on UniteRare for Fragile X-associated primary ovarian insufficiency. See the treatments and support programs sections for copay assistance, eligibility, and contact details.