Hypotrichosis simplex

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:55654OMIM:620177L65.8
Who is this for?
Show terms as
19Specialists8Treatment centers

Where are you in your journey?

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

Overview

Hypotrichosis simplex is a rare inherited condition that causes significant thinning and loss of hair across the scalp and sometimes the body. The word 'hypotrichosis' simply means having less hair than normal. Unlike many other hair loss conditions, hypotrichosis simplex is not caused by inflammation, scarring, or another underlying illness — the hair follicles themselves do not develop or function properly due to changes in certain genes. People with this condition are usually born with normal or near-normal hair, but noticeable hair thinning and loss begins in early childhood and gradually progresses over time. In some forms, hair loss is limited to the scalp, while in others it can also affect eyebrows, eyelashes, and body hair. Hypotrichosis simplex is sometimes called 'isolated hypotrichosis' because hair loss is the main or only feature — most people do not have other serious health problems linked to the condition. There are different subtypes depending on which gene is affected and how the condition is inherited. Some forms run in families in an autosomal dominant pattern (one changed copy of a gene is enough to cause the condition), while others follow an autosomal recessive pattern (two changed copies are needed). Currently, there is no cure for hypotrichosis simplex. Treatment focuses on managing the cosmetic and emotional impact of hair loss. Options include wigs, hairpieces, and general scalp care. Some people try medications used for other types of hair loss, such as minoxidil, though evidence for their effectiveness in this specific condition is limited. Psychological support and connecting with others who have the condition can be very helpful, especially for children and teenagers.

Also known as:

Key symptoms:

Progressive thinning of scalp hair starting in childhoodGradual loss of hair over the entire scalpReduced or absent eyebrowsReduced or absent eyelashesSparse or absent body hairHair that breaks easily or grows slowlyHair follicles that appear small or underdevelopedNo associated skin rashes or scarring on the scalpNormal nails and teeth (unlike some related syndromes)Normal overall health aside from hair loss

Clinical phenotype terms (6)— hover any for plain English
Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Hypotrichosis simplex.

View clinical trials →

No actively recruiting trials found for Hypotrichosis simplex at this time.

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

Search ClinicalTrials.gov ↗Join the Hypotrichosis simplex community →

Specialists

19 foundView all specialists →
MR
M Ramírez-Lluch
Specialist
1 Hypotrichosis simplex publication
AT
A Torrelo
Specialist
1 Hypotrichosis simplex publication
RG
R González-Sarmiento
Specialist
1 Hypotrichosis simplex publication
NO
N V Ortiz-Cabrera
Specialist
1 Hypotrichosis simplex publication
LM
L Martos-Cabrera
Specialist
1 Hypotrichosis simplex publication
TR
Tuntas Rayinda
Specialist
2 Hypotrichosis simplex publications
SM
Sheila M McSweeney
Specialist
2 Hypotrichosis simplex publications
DF
David Fenton
Specialist
2 Hypotrichosis simplex publications
CS
Catherine M Stefanato
Specialist
2 Hypotrichosis simplex publications
ND
Nick Dand
Specialist
2 Hypotrichosis simplex publications
JM
John A McGrath
Specialist
2 Hypotrichosis simplex publications
CT
Christos Tziotzios
Specialist
2 Hypotrichosis simplex publications
PL
P López-Balboa
Specialist
1 Hypotrichosis simplex publication
AP
Antonio Martorell, PhD
Specialist
PI on 3 active trials
BM
Brian Drolet, MD
NASHVILLE, TN
Specialist
PI on 1 active trial
LN
L Noguera-Morel
Specialist
1 Hypotrichosis simplex publication
LL
Lu Liu
Specialist
2 Hypotrichosis simplex publications
LS
Liat Samuelov
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

Travel Grants

No travel grants are currently matched to Hypotrichosis simplex.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Hypotrichosis simplexForum →

No community posts yet. Be the first to share your experience with Hypotrichosis simplex.

Start the conversation →

Latest news about Hypotrichosis simplex

No recent news articles for Hypotrichosis simplex.

Follow this condition to be notified when news becomes available.

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.

Questions for your doctor

Bring these to your next appointment

  • Q1.Which gene is most likely responsible for my (or my child's) hair loss, and should I have genetic testing?,Will the hair loss get worse over time, and how quickly might that happen?,Are there any treatments — even experimental ones — that might slow the hair loss?,Should other family members be tested, and what are the chances of passing this on to my children?,Can you refer me to a psychologist or counselor who has experience with rare skin and hair conditions?,Are there any patient support groups or communities you would recommend?,What scalp care routine would you suggest to keep my scalp healthy as hair loss progresses?

Common questions about Hypotrichosis simplex

What is Hypotrichosis simplex?

Hypotrichosis simplex is a rare inherited condition that causes significant thinning and loss of hair across the scalp and sometimes the body. The word 'hypotrichosis' simply means having less hair than normal. Unlike many other hair loss conditions, hypotrichosis simplex is not caused by inflammation, scarring, or another underlying illness — the hair follicles themselves do not develop or function properly due to changes in certain genes. People with this condition are usually born with normal or near-normal hair, but noticeable hair thinning and loss begins in early childhood and gradually

At what age does Hypotrichosis simplex typically begin?

Typical onset of Hypotrichosis simplex is childhood. Age of onset can vary across affected individuals.

Which specialists treat Hypotrichosis simplex?

19 specialists and care centers treating Hypotrichosis simplex are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.