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ACID SPHINGOMYELINASE DEFICIENCY (ASMD)

Care Clinics Application

NNPDF is pleased to have you participate in our Care Clinics valuable resource for our patients and families as they search for diagnosis, medical care, and treatment. Please complete the information below. If you have any questions, please contact us at nnpdf@nnpdf.org.
 

Listing Information for NNPDF Care Clinics Webpage:
 
* Name of Clinic:
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* City and State:
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* Type of Clinic:
* Population Age:
* Clinical Coordinator/Main Contact:
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* Title:
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* Email Address:
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* Phone Number:
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Appointment Line:
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* Website:
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* Number of ASMD patients:
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* Average time for new patients to be seen:
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* Specialists/consultants with expertise in managing patients with ASMD:
 
* Please list the name, title, and specialty of all providers who provide clinical care with ASMD patients below. Would like this information included in your listing?
NAME:
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TITLE:
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SPECIALTY:
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NAME:
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TITLE:
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SPECIALTY:
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NAME:
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TITLE:
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SPECIALTY:
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Use this space for additional provider names, titles, and specialists if needed.
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Additional Information:
 
* Do you provide any ASMD-specific educational materials to patients and their families, or direct them to specific websites for disease-related information?
If yes, please describe:
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* Has a member of your clinic ever attended an NNPDF Family Support & Medical Conference or patient education and support webinar?
If yes, please describe:
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* Has a member of your clinic ever presented at a scientific meeting on ASMD?
If yes, please describe:
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* Does your clinic participate in the International Niemann-Pick Disease Registry (INPDR)?
* Does your clinic incorporate the International Niemann-Pick Disease Alliance (INPDA) published guidelines on the diagnosis and management of ASMD into practice?
* Has your clinic conducted any recent Acid Sphingomyelinase Deficiency (ASMD) clinical research or supported an Expanded Access Program (EAP) for ASMD patients?
If yes, please describe:
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For more information on the National Niemann-Pick Disease Foundation,

Acid Sphingomyelinase Deficiency (ASMD), INPDR, or published ASMD guidelines

please visit nnpdf.org
 

PLEASE NOTE:

After completing your application, please be sure to click the Submit Application button below. If you have not received a confirmation email within 1 day of submitting your application, please reach out to nnpdf@nnpdf.org to confirm your application has been received.
 
SUBMIT APPLICATION
 
 

NATIONAL NIEMANN-PICK DISEASE FOUNDATION, INC.

PO Box 49, Fort Atkinson, WI 53538-0049

877-287-3672 | nnpdf@nnpdf.org | nnpdf.org
 

National Niemann-Pick Disease Foundation | PO Box 49 | Fort Atkinson, WI 53538-0049 US

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