Get Involved

Who can get involved in the Think Again. Think NPC campaign?

Anyone can get involved to raise awareness of NPC. This includes, but is not limited to, patient support groups, individual patients and their carers, healthcare professionals, and the media.

A number of educational materials have been developed as part of this campaign to support healthcare professionals unfamiliar with NPC to recognise the key signs and symptoms of the disease.

Who developed the Think Again. Think NPC campaign?

The following organisations and individuals have been involved in developing the campaign:

International Niemann-Pick Disease Alliance (INPDA)

The campaign is led by the INPDA, which is an international alliance of non-profit Niemann-Pick Disease patient support organisations.

Advisory committee

A multidisciplinary advisory committee of leading clinical experts in the field of NPC provided advice and input into the content of the campaign to ensure it would resonate with healthcare professionals. Find out more about the advisory committee here.

Think NPC Campaign Materials

Here you will find Think Again. Think NPC campaign materials so you can help us to raise awareness of Niemann-Pick type C disease (NPC) amongst other healthcare professionals unfamiliar with NPC. This will ultimately achieve earlier diagnosis for appropriate patients who will be referred on for diagnostic testing.

All campaign materials are available for you to download. Please contact us if you need any of the materials in another language.

Speciality-specific posters have been developed to capture the attention of healthcare professionals and encourage them to Think Again. Think NPC.

How to use the posters

You can help to raise awareness of NPC and the campaign amongst other healthcare professionals by sending posters to key hospital departments and asking them to put them up in staff only areas, placing posters in key medical journals, sharing posters at medical conferences to create campaign recognition and printing small leaflets and sharing them at meetings.

Languages to download
Adult Neurologists/psychiatrists DE EN ES FR IT
Pediatricians DE EN ES FR IT
Paediatric hepatologists/neonatologists DE EN ES FR IT

Help to raise awareness of NPC and the campaign amongst healthcare professionals by adding the campaign logo and website address to your email signature.

Download the Campaign Logo

Download the Banner

Download the Banner

How to use the banner

The banner can be hosted on relevant websites with a hyperlink through to the It can also be added to email signatures, which is a quick and easy way to instantly start raising awareness of the Think Again. Think NPC campaign.

The infographic aims to highlight key information about Niemann-Pick type C disease and the Think Again. Think NPC campaign in an easy to understand and visually engaging way.

Download the Infographic

How to use the infographic

This infographic is useful for healthcare professionals to easily communicate what the campaign is and why it has been developed.

The infographics can also be places as advertorials in key medical journals and shared via digital channels.

The Think NPC. Talk NPC symptom cards have been developed to assist healthcare professionals in earlier diagnosis of NPC by providing an interpretation of the language used by patients and carers during their appointments to identify their symptoms.

How to use the symptom cards

Share these symptom cards at meetings and events with healthcare professionals or place in your clinic or a hospital department where your colleagues will see them.

We hope these symptom cards will help health care professionals to understand and identify the key symptoms of NPC through the provision of real-world patient and carer insights. As well as triggering a connection between anecdotal insights into patient carer experience and the key signs and symptoms of NPC.

Download the Hepatosplenomegaly symptom card

Download the Dysarthria symptom card

Download the Ataxia symptom card

Download the Organ Psychosis symptom card

Download the Gelastic Cataplexy symptom card

Download the VSGP symptom card

Ideas to support the Think Again. Think NPC campaign

Below are some ideas to assist you when planning your Think Again. Think NP-C campaign. You may already have a clear vision of the activities you want to carry out in your country and so the examples below are to simply guide and inspire you

Identify relevant national and regional conferences and approach organizers/ secretariat to understand if you can have a campaign stand there.

At the conference you could:

  • develop a branded banner stand
  • give out campaign leaflets with a link to Think Again. Think NPC. 
  • Play the campaign showreel and campaign films

Before starting a Think Again. Think NPC campaign you may find it helpful to set a realistic objective of what you would like to achieve through engaging with the medical media. For example, you might want to start by targeting a specific healthcare professional audience e.g. paediatricians so you can shape your media activities towards a particular group.

The first step to engaging with the medical media is to identify appropriate media outlets that will reach your target audience, some of the ways this can be done are listed below:

  • Desk-based research using search engines to find websites and other information about NPC and/or other rare diseases.  This will help uncover who is writing about NPC.
  • Sign up to Google alerts using keywords related to NPC to receive daily updates on news pieces published on NPC.
  • Conduct targeted research of relevant journal websites you know, to find out whether they have covered NPC or other rare diseases in the past.
  • Sign up to receive email alerts from journals relevant to NPC, including those focusing on paediatrics, neurology, psychiatry, genetics and orphan/rare diseases, to monitor media outlets covering stories on NPC or other rare diseases.
  • Contact relevant professional organisations in your country as they may develop a medical journal or have some medical media contacts that they can share with you e.g. the European Neurological Society develops the Journal of Neurology.

Below are some other ideas to keep the medical media engaged and interested in NPC:

  • Invite key medical media journalists to appropriate events you hold with healthcare professionals around the campaign launch or developments in NPC so they can hear first-hand about the campaign and what it means for their readers.
  • Encourage key medical media journalists to attend relevant scientific conferences in your country, especially if you have a campaign stand there, NPC data is being presented and/or your spokespeople are in attendance.
  • Place speciality specific campaign adverts in key medical journals. The speciality specific posters linked above can be used as the advert. Advertising usually needs to be paid for but some organisations have charitable rates or have an allowance for free advertising. Otherwise, you might want to engage with campaign partners, such as pharmaceutical company, for support in placing adverts in relevant journals.

If you host a stand-alone meeting you could consider inviting priority healthcare professionals and your campaign ambassadors (and medical media where appropriate).

Contact professional organisations to understand if they will include information about NPC and the campaign:

  • In their newsletter
  • On their website
  • In an email to their members

Engaging with social media channels is important for any campaign as it can help reach more individuals that you may have not been able to reach through such methods as medical journals and conferences. Interacting with your target audience can also encourage and motivate them to take action, rather than just providing them with static information.

To be successful in using social media, the most important aspect is building up a network of healthcare professionals you are trying to reach with campaign messages or those healthcare professionals who can help disseminate messages to their peers. This will ensure the right healthcare professionals are reading the campaign key messages and engaging with the conversations.

There are a number of activities you can do, including:

Add links to your Facebook, Twitter and LinkedIn pages to key materials: 

  • Include links to your Facebook, Twitter and LinkedIn pages to campaign materials

Engage with professional organisations online: 

  • Search for professional organisations on Twitter, Facebook and LinkedIn, add them as a follower and ask them to do the same
  • Engage with the conversations led by these professional organisations and healthcare professionals

Use key platforms to increase your social media activity: 

  • Use key conferences and meetings as a platform to encourage healthcare professionals to get involved in the conversation
  • Follow key healthcare professionals on social media channels.


"...Think Again. Think NPC aims to reduce the time to diagnose by supporting healthcare professionals who are unfamiliar with NPC to recognise the key signs and symptoms of the disease..."