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NNPDF Membership & Family Support Services

NNPDF Membership

The NNPDF provides services to all individuals affected by Niemann-Pick Disease.   We ask and hope that families and extended families/friends will help the Foundation through personal contributions and fundraising contributions to assist with administrative costs and research funds to find a cure.

To become a member click on a membership registration option below.   This is a simple way to become a member of the NNPDF. Membership is open to families affected by Niemann-Pick Disease, extended family, friends, and community supporters.

WEBSITE BUTTONS online membershipComplete registration form online.

WEBSITE BUTTONS printable membershipPrint out and complete form including signature and date.
Mail completed membership form to:

NNPDF  |  P.O. Box 49  |  Fort Atkinson, WI 53538-0049

 


Family Support Services

Living with Niemann-Pick Disease creates an emotional burden that may be difficult to bear. NNPDF’s Family Services Program anticipates and responds to the needs of all individuals dealing with Niemann-Pick disease.  Our goal is to reduce the burden of Niemann-Pick Disease on affected individuals and families.

Our programs provide:
  • Emotional support to individuals and families dealing with all types of Niemann-Pick Disease;
  • Assistance through a crisis;
  • Information and ideas about issues such as doctors, clinics, insurance companies and other health and human service programs;
  • Practical suggestions about day-to-day care.
NNPDF’s Family Support Services Include:
  • The NNPDF Newsletterand Family Supplement — The NNPDF Newsletter is sent to anyone interested in or affected by Niemann-Pick Disease. The Family Supplement is sent to NPD families, and extended families who specifically request it.
  • The NNPDF Annual Family Conference — The annual NNPDF Family Support and Medical Conference brings together families, scientists, and medical professionals to share information and provide support. Conferences have been held every year since 1992.
  • Electronic Mailing List — NNPDF facilitates electronic discussions among individuals and families affected by Niemann-Pick Disease.  We have listservs for each type of the disease (NPA, NPB, and NPC), which provide opportunities for discussion and sharing of concerns, problems, and solutions for NPD families and others interested in the disease. NNPDF also sponsors a general Support listserv and a Siblings listserv.   For details on joining the listservs, scroll farther down this page.
  • NNPDF Web Site — The Web site contains current information on the Foundation, NPD research, fund raising events and opportunities, and many other issues.
  • Online Store —Books, toys, and adaptive aids that may be helpful are featured from a variety of sources. Niemann-Pick awareness items are also available.
  • The NNPDF Educational Initiative — NNPDF provides mailings of medical and educational information to assist in the correct diagnosis and referral of people with NPD.  Information is available for schools, physicians, and other health-care professionals.

NNPDF Listservs ~ Email Groups

NNPDF offers four email lists (listservs) for use by Niemann-Pick families, friends, caregivers, and other interested parties. (A fifth listserv, the “Angels” group, is run by families and caregivers.)

These listservs offer a place where you can share your thoughts, ideas, and challenges with others who have faced, or who are facing, Niemann-Pick Disease.  Ask questions, raise concerns, express your feelings, offer support to others, or simply listen; the lists are made available to help meet your needs during this journey.

Lists run by NNPDF are subject to Guidelines on the use of this service.
By joining any list, you agree to abide by the terms of the Guidelines.

TYPE A LIST:
For families, friends & others interested in Niemann-Pick Type A.
Type A Listserv Home Page   |   Sign In/Join Yahoo! Groups   |  Join By Email

TYPE B LIST:
For families, friends & others interested in Niemann-Pick Type B.
Type B Listserv Home Page   |   Sign In/Join Yahoo! Groups   |  Join By Email

TYPE C LIST:
For families, friends & others interested in Niemann-Pick Type C.
Type C Listserv Home Page   |   Sign In/Join Yahoo! Groups   |   Join By Email

SIBLING LIST:
For children and young adults who have a brother or sister with Niemann-Pick Disease.
Sibling Listserv Home Page   |   Sign In/Join Yahoo! Groups   |   Join By Email

ANGELS LIST:
For those who have lost a loved one to Niemann-Pick Disease.
(This list is not run by NNPDF.  It is run by families and caregivers).
Angels Listserv Home Page   |   Sign In/Join Yahoo! Groups   |   Join By Email




FAQs (Frequently Asked Questions)


1.  How do I join one of the NNPDF’s listserv groups?

A free Yahoo! account is required for membership in any NNPDF listserv group.

In an effort to prevent spammers and commercial entities from joining the NNPDF listservs, all new memberships must be approved by a moderator.

a.  Visit the Listserv’s Home Page

Select which listserv you would like to join (Type A, Type B, Type C, etc., above) and click on the “Listserv Home Page” link below it.  Once there, use the “Sign In” button at the top to log in to an existing Yahoo! account, or the “Sign Up” button just below it to register for a Yahoo! account. Once you are successfully logged in to Yahoo!, back at the Listserv’s Home page, click “Join This Group.” Your membership will be reviewed by a moderator and confirmed, within a couple of business days at the most.

OR

b. Sign In or Join Yahoo!

Click on the “Sign In/Join Yahoo!” link.  You will be asked to log in to your Yahoo! account, or to register for one if you do not already have one. Once you are successfully logged in to Yahoo!, visit the Listserv’s Home page and click “Join This Group.”  (Use the “Listserv Home Page” links above, or you may use Yahoo’s Search function to locate the particular listserv you want to join.)  Your membership will be reviewed by a moderator and confirmed, within a couple of business days at the most.

OR

c.  To join via email

If you are unable to navigate through either of the above methods and need assistance joining, click the “Join by Email” link and enter your request into the body of the email.  Your membership request will be reviewed by a moderator and confirmed, within a couple of business days at the most.

2.  How do I change my email address associated with a listserv group?

Click on the “Listserv Home Page” link for the appropriate listserv (above), and sign in to your Yahoo! account.  Click “Edit Membership,” and then “Add new email address.”  Be sure the new email address is then selected as your “Primary Email Address.”

3.  How do I unsubscribe from a listserv group?

Click on the “Listserv Home Page” link for the appropriate listserv (above), and sign in to your Yahoo! account. Click “Edit Membership,” scroll down to the bottom and click the “Leave Group” button on the bottom right.  You will see a message asking you to confirm that you wish to leave the group.  Click “Leave Group” on this window, as well, to complete the process.

For more help with Yahoo! (including managing your memberships and how to post a photo), visit Yahoo! Help pages here and here.

To join the NNPDF, please scroll back up to the links to Membership Forms near the top of this page.