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Support Services

Families Services begin as soon as a family connects with NNPDF – for some that is when Niemann-Pick disease has been suspected. We help families to ensure they are connecting with NPD experts and getting proper diagnostic testing completed in a timely manner. Once a diagnosis is confirmed, we connect with the family, learn their diagnostic story, answer any questions they have, help address any issues or concerns provide resources and share all available treatment options for either ASMD or NPC.

  • We encourage families to explore all available experimental treatment options to allow them to best make a treatment plan for their family.
  • We connect newly diagnosed families with experienced families – NPD families share a unique bond.
  • We provide emotional support and assistance during a crisis.
  • We share information and resources: procedure or surgery information, durable medical equipment, insurance, respite, palliative care, hospice and health and human service programs.

 

Comprehensive Care Centers

NNPDF has created a listing of Comprehensive Care Centers that have experience in caring for and treating Niemann-Pick disorders. This project is supported by our NNPDF Scientific Advisory Board and this information has been provided to us by the institutions. We are proud to offer this valuable resource to our families as they search for medical care and treatment.

 

Family Assistance and Support Program

Family Assistance and Support Program provides relief to members facing a situation that threatens their immediate health and safety, or that causes a terrible hardship. It is intended to provide short term financial assistance in a crisis situation and is not intended to address long term financial challenges. Funding includes but is not limited to, specialized medical equipment, durable medical goods, utility bills (heating and cooling, electricity, phone, water and sewer), home and car repairs, and bereavement expenses. 

NNPDF works with community partners to help amplify the patient voice by:

  • Collaborating with industry partners to identify patient speakers, focus group members and market research interview participants.
  • Assisting industry projects by providing input into resources for the Niemann-Pick community and also the rare disease community as a whole. 
  • Connecting families with the media to help raise awareness locally.

NNPDF Cares Bags

NNPDF CARES bags (Caring, Assistance, Resources, Encouragement & Support) help to assist Niemann-Pick families beginning therapeutic experiences in the U.S. The bag contains small items to make the burden of living with and caring for Niemann-Pick disease patients a little easier during their clinic visits. It is also a way to connect families to NNPDF early in their treatment experience and better enable them to find our resources and family supports. NNPDF CARES bags have been available at clinic sites in Chicago (IL), New York (NY), Oakland (CA), Rochester (MN), and Washington DC. This simple act of kindness is made possible by our donors. 

Community Connections & Coffee and Catching up are weekly zoom meetings allowing a time for our community members to come together and chat. Watch our upcoming events page for dates and times.

Navigating Together series is a new direct services program to provide a confidential space for families to process the complexities related to the realities of loss on multiple levels and is led by a licensed professional trained in grief counseling. 

The first session was held in the Spring for our members that have lost a loved one.

Additional Navigating Together sessions will be held for ASMD and NPC Families and may include specific sessions for families during all phases of the Niemann-Pick journey such as – late Onset NPC, Legacy Families, Newly Diagnosed Families.

NNPDF Bereavement program provides emotional support to families experiencing a loss. This includes:

  • A series of booklets sent to families during the first year to help with the grief experience.
  • Memorial tributes on social media and memorial video at conference.
  • Legacy and Loss sessions at conference allowing a time for bereaved families to gather together and provide comfort to one another.
  • Navigating Together: Legacy Families – small group sessions with a therapist.

Donor Directed Programs are created at various times throughout the year as supported and requested by a donor.

Contact Laurie Turner, NNPDF Family Services Manager at 920-542-4038 or by email at familyservices@nnpdf.org for more information.

Community Connections and Coffee & Catching up

Community Connections and Coffee & Catching up are weekly zoom meetings allowing a time for our community members to come together and chat. Watch our upcoming events page for dates and times.

Navigating Together series is a new direct services program to provide a confidential space for families to process the complexities related to the realities of loss on multiple levels and is led by a licensed professional trained in grief counseling. 

The first session was held in the Spring for our members that have lost a loved one.

Additional Navigating Together sessions will be held for ASMD and NPC Families and may include specific sessions for families during all phases of the Niemann-Pick journey such as – late Onset NPC, Legacy Families, Newly Diagnosed Families.

NNPDF Bereavement Program

Community Connections & Coffee and Catching up are weekly zoom meetings allowing a time for our community members to come together and chat. Watch our upcoming events page for dates and times.

Navigating Together series is a new direct services program to provide a confidential space for families to process the complexities related to the realities of loss on multiple levels and is led by a licensed professional trained in grief counseling. 

The first session was held in the Spring for our members that have lost a loved one.

Additional Navigating Together sessions will be held for ASMD and NPC Families and may include specific sessions for families during all phases of the Niemann-Pick journey such as – late Onset NPC, Legacy Families, Newly Diagnosed Families.

NNPDF Bereavement program provides emotional support to families experiencing a loss. This includes:

  • A series of booklets sent to families during the first year to help with the grief experience.
  • Memorial tributes on social media and memorial video at conference.
  • Legacy and Loss sessions at conference allowing a time for bereaved families to gather together and provide comfort to one another.
  • Navigating Together: Legacy Families – small group sessions with a therapist.

Donor Directed Programs are created at various times throughout the year as supported and requested by a donor.

Contact Laurie Turner, NNPDF Family Services Manager at 920-542-4038 or by email at familyservices@nnpdf.org for more information.

Supporting one another. Supporting our community.