International Niemann–Pick Disease Alliance
Last week, our campaign to improve diagnosis of Niemann Pick Type C (NP-C) went on the road to Lyon, France, to take part in the SSIEM’s (Society for the Study of Inborn Errors of Metabolism) Annual Symposium.
Representatives from the INPDA and French member Vaincre Les Maladies Lysosomales (VML) were on hand throughout the week, sharing information on NP-C, the Think Again. Think NPC campaign, and the available tools and resources that have been developed to support faster diagnosis of NP-C.
This was a truly international opportunity to spread awareness of NP-C, with several thousand delegates in attendance. Contacts were made with physicians from all corners of the world, including France, the UK, Iran, Algeria, Slovakia, Hungary, South Korea, Romania, Jordan, USA, Germany, Australia, the Netherlands, and Egypt.
It was exciting to share our campaign materials and provide links to further downloadable information via the campaign website www.think-npc.com. This information will be taken back to each country and shared more widely with colleagues. Although many individuals we spoke with had heard of or come across patients with NP-C in the past, it seems that our campaign really drives home the message that anyone can be affected by NP-C (it’s not solely a disease that affects children), and emphasises the importance of checking for eye movement abnormalities when linked with other symptoms.
As an example, a neurologist from Algeria (specialising in dementia), took posters to help colleagues link the symptoms they may see together, with NP-C. She wasn’t aware that NP-C could affect adults, underlining the importance of this campaign.
With improved awareness, we’ll achieve faster diagnosis and ultimately improved care for people with NP-C.