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Hello and thank you for engaging with LHON Collective!

You've indicated you are affected by LHON. We'd like to ask additional questions to better engage with you.

Answer as many or as few of the questions as comfortable and Submit when finished.

If you prefer, you can work with an LHON representative in a live format (video/phone call).

Use our scheduling app to schedule time or email: connect@lhon.org

Need Help? Schedule Time

CONTACT INFO

Preferred contact method

Mobile phone

Alternate phone

Secondary email

Subscribe to LHON Collective e-mail newsletter

Salutation

Nickname

Other last name(s) ever used

Preferred pronouns

Suffix

Credentials

LHON SPECIFIC INFO

Mutation

LHON eye doctor(s)

Facebook name

Global LHON Facebook Group Member

If mutation is unknown

Additional LHON doctor(s)

Other social media handles

Onset date of vision loss

Assistive training obtained

Do you have a guide dog?

Age at onset

Postal code where residing at onset

Suspected cause of onset

Affected eye(s)

Family members affected

Name(s) of family members affected

Recovered vision (able to drive again)

Lost vision again (legally blind)

Have you registered for the LHON Data Collection Program?

lhon.rare-x.org

Do you have other vision symptoms?

Choose other vision symptoms

Charles Bonnet Syndrome

Color vision loss

Photophobia

Other

Other vision symptoms

Guide dog source

Sports

LHON community connections

LHON conferences attended

Other conferences attended

Leadership in blind/VI organizations

Do you have any non-vision symptoms?

Choose non-vision symptoms

Alcohol use disorder

Auditory processing (CAPD) or hearing loss

Autism spectrum disorder

Cardiac (e.g. arrhythmia, cardiomyopathy)

Chronic pain, fatigue and/or muscle weakness

Mood disorder (e.g. anxiety, depression)

Multiple sclerosis (MS)

Neurologic (e.g. migraine, tremor, neuropathy)

Other

Other non-vision symptoms

ADDITIONAL INFO

Birthdate

Gender at birth

Current gender

College(s) attended

Collegiate or service organizations

Are you a veteran?

Military branch

Facebook name

Global LHON Facebook group member

LHON (BLIND) - Global Group

Other social media handles

Employment status

Where currently employed

Profession or field of work

Preferred language

CLINICAL TRIALS OR STUDIES

Select Yes if you have participated in an LHON clinical trial.

Yes

No

Location of clinical trial

Date of clinical trial

Sponsor of clinical trial

Name of clinical trial

Select Yes if you have participated in an LHON study.

Yes

No

Location of study

Date of study

Name of study

Topic of study

Product used in clinical trial

Other products used in clinical trial

Response to clinical trial

PRESENTATIONS OR TALKS

Past presentations or talks

Willing to present

Would you be willing to present in the future concerning LHON?

Thanks for submitting!

contactInfo

LHON Collective collects information as a way to further our mission to improve the lives of persons affected by LHON Collective through support, education, and research. It is the goal and intent of LHON Collective to protect your privacy. Review our privacy policy to learn what information we collect, how we use it, how that information is protected, and what you should do if you would like to request or update your information.

This website should be considered general information only and should not be considered medical guidance or professional advice. Always direct any questions concerning your personal health to your doctor or another appropriate health care professional.

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