AHDS Rare360 Perspectives, Insights & Experiences (P.I.E)

Allan-Herndon-Dudley Syndrome (AHDS) Rare360 Perspectives, Insights & Experiences (P.I.E)

Subscribe to the Rare360 P.I.E. program to get counted!
The goal is to identify the global prevalence of AHDS to better understand the impact of this rare disease and the needs of the AHDS community.

Have any questions? Please email us at admin@rare360.life.
Choose all of the following options that best describe you:*

I am a person diagnosed with AHDSI am suspected of having AHDSI care for someone diagnosed with AHDSI care for someone suspected of having AHDSI am a friend and ally of the AHDS CommunityNone of the above
How long ago were you diagnosed with AHDS?*

Within the past 6 months7-24 months ago3-5 years ago6-10 years ago10+ years ago
How long ago was your loved one diagnosed with AHDS?*

Within the past 6 months7-24 months ago3-5 years ago6-10 years ago10+ years ago
Please select the age group that fits your current age*

Under 1818-2526-3536-4546-5556-6565+Prefer not to say
What was your biological classification at birth?*

FemaleMaleOther (e.g., intersex)Prefer not to answer
What is your racial classification? Select ALL that apply*

Native AmericanAsianBlackWhiteDon’t know/Not surePrefer not to answer
What is your ethnicity? Select ALL that apply.*

Hispanic or LatinoNon-Hispanic Caribbean AmericanAfrican AmericanAlaska NativeNative Hawaiian or other Pacific IslanderAsian AmericanCajunCaucasianMiddle EasternDon’t know/Not surePrefer not to answer
Which category BEST describes the highest level of education that you have acquired? Select ONE answer*

No schooling completedGrade school (e.g., completed up to Grade 8)Some high school, no high school degreeHigh school graduate or GEDProfessional Trade Certification, no college degreeSome college, no college degreeAssociate degree (e.g., AA, AS, etc.)Bachelor’s degree (e.g., BA, BS, etc.)Some post-graduate studies, no post-graduate degreeMaster’s degree and/or Doctoral degreePrefer not to answer
Do you consent to be contacted by Rare360, powered by the Rare Advocacy Movement (RAM)?*

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Name*

First NameLast Name
Email*
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Where do you reside?*

Street Address

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CityState / Province

Postal / Zip CodeCountry
Phone Number
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Address

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Allan-Herndon-Dudley Syndrome (AHDS) Rare360 Perspectives, Insights & Experiences (P.I.E)