Patient Resources

You Inspire Us

We are committed to working closely with patients, their families, caregivers and advocacy groups to provide support, connections and resources to help build awareness and bring much needed solutions to reality. For questions regarding our programs or to request to keep in touch, please contact

Patient Support Organizations

Niemann-Pick Type C1 (NPC)

With a diagnosis of Niemann-Pick disease type C, patients
and families can have many questions:

  • What causes NPC?
  • What are the symptoms?
  • Is there research underway to try to find a treatment?

The first step is getting the information you need.


National Niemann-Pick Disease Foundation, Inc.

The National Niemann-Pick Disease Foundation, Inc. (NNPDF) is a non-profit, patient advocacy and family support organization dedicated to supporting and empowering patients and families affected by Niemann-Pick disease, through education, collaboration and research. Founded in 1993, NNPDF serves families throughout the nation at all stages of their Niemann-Pick journey. The NNPDF is the US member organization of the International Niemann-Pick Disease Alliance (INPDA).


Niemann-Pick UK

Niemann-Pick UK (NPUK) is a charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases. We raise much needed awareness, provide practical and emotional support, advice and information and facilitate research into potential therapies.


International Niemann-Pick Disease Registry

On a day to day basis, the Registry Management Team is responsible for implementing strategy, ensuring compliance and responding to enquiries, including data requests. The Registry Management Team works closely with a Working Group and specialist Sub Working Groups made up of representatives from patient groups, clinicians, industry and researchers as a panel of experts to encourage collaborative working and best practice.

Alzheimer’s Disease


Alzheimer’s Association

The Alzheimer’s Association leads the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.


Alzheimer’s Foundation of America

The mission of the Alzheimer’s Foundation of America (AFA) is to provide support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias nationwide, and fund research for better treatment and a cure.



UsAgainstAlzheimer’s exists to conquer Alzheimer’s disease. Since our founding in 2010, we have taken on the toughest problems in the fight to end Alzheimer’s. Our work is driven by the urgency to find effective treatments and the prevention steps needed to reach the time where no one is lost to Alzheimer’s.

Trappsol® Cyclo™ is not currently approved for any indication.

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