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Full Resource Name:
Children's Tumor Foundation, The (CTF)
Address
132 E. 43rd Street
Suite 418
New York, NY 10017
AKA:
Formerly National Neurofibromasis Foundation
Description:
*Provides accurate and current information regarding neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis to patients, families and medical field
*Offers an online healthcare provider directory of doctors who specialize in neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis linked to the NF Collective
*Manages the NF Registry website where people with NF fill out an anonymized survey about symptoms and experiences on a yearly basis to assist with research and education; join on the website
*In partnership witih Indiana Univerisy CTF manages a Human tissue biobank of NF1, NF2, and schwannomatosis tissue samples; link on website to reqest access for research or to donate
*Holds an annual no-cost summer camp for teens and young adults ages 12 to 21 living with neurofibromatosis (NF) third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah
Intake Process:
Call or go online
Program Fees:
None
Is Shelter?
No
Related Resource
Date of Official Change:
July 18, 2023
Geographies Served
Serves All Areas
Address Listings
P.O. Box
PO Box 7247
c/o donations - Mail code 6895
Philadelphia, PA 19170
Physical (Primary)
132 E. 43rd Street
Suite 418
New York, NY 10017
Mailing
132 E. 43rd Street
Suite 418
New York, NY 10017
Contacts
Liz Oliver
Phone Numbers
Toll-Free Number
(800) 323-7938
Services
Click here to show all service details. Or click on a service name to see its details specifically.
Description
*Holds an annual no-cost summer camp for teens and young adults ages 12 to 21 living with neurofibromatosis (NF) third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah
Hours
9AM-5PM, M-F, Office hours; Leave voice mail messages 24/7
Required Documents
None
Eligibility
Neurofibromatosis patients and families
Fees
None
Intake Procedure
Call, email, or use website contact form
Languages
English; Spanish (limited); French (limited)
Offered Outside of Physical Location
Yes
Service Area
All Areas
Geography Served
If a location is grayed out it means that only certain areas within it are covered. The areas with complete covereage are listed in black.
Serves all areas
Description
*Manages the NF Registry website where people with NF fill out an anonymized survey about symptoms and experiences on a yearly basis to assist with research and education; join on the website *Provides accurate and current information regarding neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis to patients, families and medical field *Offers an online healthcare provider directory for doctors who specialize in neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis linked to the NF Collective *Manages the NF Registry website where people with NF fill out an anonymized survey about symptoms and experiences on a yearly basis to assist with research and education; join on the website
Hours
9AM-5PM, M-F, Office hours; Leave voice mail messages 24/7
Required Documents
None
Eligibility
Neurofibromatosis patients and families
Fees
None
Intake Procedure
Call, email, or use website contact form
Languages
English; Spanish (limited); French (limited)
Offered Outside of Physical Location
Yes
Service Area
All Areas
Geography Served
If a location is grayed out it means that only certain areas within it are covered. The areas with complete covereage are listed in black.
Serves all areas
Description
*Provides accurate and current information regarding neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis to patients, families and medical field *Provides accurate and current information regarding neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis to patients, families and medical field *Offers an online healthcare provider directory for doctors who specialize in neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis linked to the NF Collective *Manages the NF Registry website where people with NF fill out an anonymized survey about symptoms and experiences on a yearly basis to assist with research and education; join on the website *In partnership witih Indiana Univerisy CTF manages a Human tissue biobank of NF1, NF2, and schwannomatosis tissue samples; link on website to reqest access for research or to donate *Holds an annual no-cost summer camp for teens and young adults ages 12 to 21 living with neurofibromatosis (NF) third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah
Hours
9AM-5PM, M-F, Office hours; Leave voice mail messages 24/7
Required Documents
None
Eligibility
Neurofibromatosis patients and families
Fees
None
Intake Procedure
Call, email, or use website contact form
Languages
English; Spanish (limited); French (limited)
Offered Outside of Physical Location
Yes
Service Area
All Areas
Geography Served
If a location is grayed out it means that only certain areas within it are covered. The areas with complete covereage are listed in black.
Serves all areas
Description
*Offers an online healthcare provider directory for doctors who specialize in neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis linked to the NF Collective *Provides accurate and current information regarding neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis to patients, families and medical field *Offers an online healthcare provider directory for doctors who specialize in neurofibromatosis and the three distinct vartiations: NF1, NF2, and Schwannomatosis linked to the NF Collective *Manages the NF Registry website where people with NF fill out an anonymized survey about symptoms and experiences on a yearly basis to assist with research and education; join on the website *In partnership witih Indiana Univerisy CTF manages a Human tissue biobank of NF1, NF2, and schwannomatosis tissue samples; link on website to reqest access for research or to donate *Holds an annual no-cost summer camp for teens and young adults ages 12 to 21 living with neurofibromatosis (NF) third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah
Hours
9AM-5PM, M-F, Office hours; Leave voice mail messages 24/7
Required Documents
None
Eligibility
Neurofibromatosis patients and families
Fees
None
Intake Procedure
Call, email, or use website contact form
Languages
English; Spanish (limited); French (limited)
Offered Outside of Physical Location
Yes
Service Area
All Areas
Geography Served
If a location is grayed out it means that only certain areas within it are covered. The areas with complete covereage are listed in black.
Serves all areas
Description
*In partnership witih Indiana Univerisy CTF manages a Human tissue biobank of NF1, NF2, and schwannomatosis tissue samples; link on website to reqest access for research or to donate
Hours
9AM-5PM, M-F, Office hours; Leave voice mail messages 24/7
Required Documents
None
Eligibility
Neurofibromatosis patients and families
Fees
None
Intake Procedure
Call, email, or use website contact form
Languages
English; Spanish (limited); French (limited)
Offered Outside of Physical Location
Yes
Service Area
All Areas
Geography Served
If a location is grayed out it means that only certain areas within it are covered. The areas with complete covereage are listed in black.
Serves all areas