Histiocytosis Association

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Understanding Histio
Research
Resources
Who We Are
Get Involved
Donate
Subscribe

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Patients

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We ask for detailed information to help us best understand the makeup of the histiocytosis community and to tailor our communications, outreach, programs, and services as best as possible to your needs and concerns.

We will provide you with customized content and the relevant information you need based on your interests. Keep an eye on your inbox for more information soon!

Your Contact Information:


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Question - Required - Gender:

What is your race or ethnicity?

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Question - Required -What is your race or ethnicity? Click this to indicate that you will select an existing value. Tab to next input." What is your race or ethnicity?
What is your race or ethnicity? Click this to indicate that you will enter a new value. Tab to next input." What is your race or ethnicity? Provide your answer here

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Question - Required - What was the age at symptom onset?

Question - Required - Are you also affected by Diabetes Insipidus (AVP-D)?

Question - Not Required - What year was the Diabetes Insipidus (AVP-D) diagnosis? (Example: 2024)

Question - Required - Was genomic profiling completed to identify whether a genetic mutation was/is present?

Please share the genetic mutation to help research efforts (if unknown, select unknown):

(Select one of the available choices or enter a different value.)
Question - Required -Please share the genetic mutation to help research efforts (if unknown, select unknown): Click this to indicate that you will select an existing value. Tab to next input." Please share the genetic mutation to help research efforts (if unknown, select unknown):
Please share the genetic mutation to help research efforts (if unknown, select unknown): Click this to indicate that you will enter a new value. Tab to next input." Please share the genetic mutation to help research efforts (if unknown, select unknown): Provide your answer here

Question - Required - Are you currently in treatment for histiocytosis?

Question - Not Required - If still in treatment, how many years of treatment were administered or currently has been administered?

What form(s) of treatment were administered:

(Select one of the available choices or enter a different value.)
Question - Required -What form(s) of treatment were administered: Click this to indicate that you will select an existing value. Tab to next input." What form(s) of treatment were administered:
What form(s) of treatment were administered: Click this to indicate that you will enter a new value. Tab to next input." What form(s) of treatment were administered: Provide your answer here

Question - Not Required - What would you like future efforts to focus on?

	Finding a knowledgeable physician
	Long term follow-up guidance
	Transition care model pediatric to adults
	Early diagnosis
	Physical symptom management
	Psychological symptom management (emotional support, therapy, grief, etc.)
	Financial support (for treatment, transportation, etc.)
	Finding newer treatments
	Other

Question - Required - I would like to be connected with a volunteer who can share more information about an important research opportunity for histiocytosis that is open for patient-family participation. This conversation would be for informational purposes only and a member of the Histiocytosis Association team will make the introduction.

Question - Not Required - What topics are you most interested in (to aid development of resources, webinars, etc.):

Question - Required - What information are you most interested in?

	Adult Patient Resources
	Awareness & Events
	Caregiver Resources
	Pediatric Patient Resources
	Research & Disease Updates
	Volunteering

Question - Required - Would you like to Go Paperless?

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Histiocytosis Association, Inc.

332 North Broadway, Pitman, New Jersey 08071 USA
Phone: +1 856-589-6606 | Fax: +1 856-589-6614
Email: info@histio.org

US & Canada Toll-Free: 1-800-548-2758
Tax ID: 22-2827069

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