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Reasons to Attend the 2020 Digital Annual Family Conference & Interactive Workshop: SUPPORT

Posted: 02.09.20

We are so excited for our upcoming Digital Annual Family Conference & Interactive Workshop, which this year takes place on the 25th-27th September. There are so many reasons to attend this year’s digital event – in particular, we hope that environment of “support” that our Conference harbours, both through the wonderful families and medical professionals that attend and events/activities that are scheduled to take place, will encourage you and your family to get involved.

A diagnosis of Niemann-Pick disease for either yourself or a loved one can often lead to having to explain and re-explain your condition constantly in day-to-day life; from school meetings to hospital appointments, when talking to friends and family or even members of the public on a daily basis…individuals within the NPUK community have often pointed out that they often feel like the medical expert when describing a diagnosis to others, as they have to do it so much! The feeling that no one else understands what you or your loved one is experiencing can often result in a sense of isolation, the belief that no one else with a “normal” life can get your point of view. But not with NPUK, not within our community!

The Niemann-Pick community in the UK is spread out, with families up in Inverness all the way down to Eastbourne. However, our community remains strong and close knit. This is in part due to our amazing Annual Family Conference & Interactive Workshop, which works to connect members of our community and remind everyone that they are in fact not alone! “Support” has been integral to the planning of past Conferences as our main intention has been to provide a safe space for our community where individuals are aware that whatever they are facing, those around them have either experienced similar challenges or are ready to listen and support them in any way they can. This is what makes our Conference and our community more broadly, so special.

As you may know, our wonderful Care & Support Team are always on hand to provide support and assistance to our community in any way they can, not just during Conference weekend! Since 1991 we have worked to create a service that provides support to those who need it most. This year, as always, our Care & Support team will be in attendance at Conference and will be chairing several events and activities including a Well Being Session and the NPUK Youth Council.

Although due to the ongoing COVID-19 situation we have taken the decision to go Digital this year, rest-assured “support” remains our main priority. Yes, this year will look and feel different as face-to-face interaction is not possible, but the NPUK Team are working hard to create a fantastic programme that we are sure will continue to provide support to members of our community. With one eye on 2021…

Whether it is knowing there is a understanding ear available or a helping hand to consider the financial support available to you and your family, the 2020 Digital Annual Family Conference & Interactive Workshop is there to support you.

If you are wanting to attend the 2020 Digital Annual Conference & Interactive Workshop and have not yet registered, fill out the quick and easy form via the link here and join our countdown!

If you have any issues with the form or further questions regarding this year’s event please don’t hesitate to contact us by email at: or by phone on: 0191 415 06 93 and we will do all we can to resolve the problem.