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

Posted: 09.09.20

As we get closer and closer to this year’s Annual Family Conference & Interactive Workshop (25th-27th September) the excitement continues to grow! The NPUK community is often regarded as a “second family” by its members due to our community’s small and close-knit nature. We trust that this year’s milestone weekend, despite the “digital” of the 2020 programme, will still retain many features that have made it special for over 25 years; namely an established welcoming and safe environment for families and professionals alike to meet…an event which is both informative and collaborative, as well as fun! 

The NPUK families are what make our community so exceptional, which is why you’ll never see us be quiet on that front! The success of our Annual Family Conference & Interactive Workshop in the past is indebted to the support, enthusiasm and feedback of our families, as it is for them and with them in mind that we develop the programme and its associated activities.  Their engagement has allowed NPUK to tailor each event to the specific needs of our community  and enabled the Conference to evolve from year to year into an even more successful event – the largest dedicated Niemann-Pick meeting in the whole of Europe.

We know how important the Conference is to many families within our community, providing a great opportunity to get together to catch up! This personal aspect cannot and should not be underestimated; for our families it is often not so much the updates on clinical trials and research that are the mainstay event at Conference but the interaction with other families in the NPUK community – the greetings and hugs on arrival to the heartfelt farewells at the conclusion of Conference! It’s incredible to feel secure and seen.

We are aware that many in our community are saddened by the  news that we are unable to safely organise a face-to-face meeting this year due to the ongoing challenges presented by the COVID-19 situation. This year has been particularly tough and this has affected members of the NPUK community who have faced new and unforeseen challenges. These struggles have added to the sense of isolation many members of our community experience; hence, this year’s Conference is all the more important to reach out to our wonderful community and bring everyone together- albeit, digitally!

We have adapted this year’s Conference programme to ensure that we still provide multiple opportunities for our families to interact with one another. As such “interaction” has been one of our main priorities when working on the Conference schedule as we wanted to provide as many opportunities as possible for our families to get together, relax and have fun, just as they have done at our previous Conferences.

We have a number of activities and sessions organised with our NPUK families in mind during the Conference. As ever our Children & Young Persons Activity Programme will be taking place over the weekend, with events such as the Kid’s Disco and Karen’s Crafty Corner not to be missed!

For NPUK households we are excited for an evening of fun on the 26th September with a variety of activities taking place such as Terry’s quiz taking place over on Zoom and music streaming on Facebook Live.

As ever, our Conference is so important for enabling conversations between families and this is why we have a digital chat feature available throughout the Conference. The chat bar will be simple to use and provide the opportunity for our families to offer feedback to the event overseer and keep in contact with one another during the weekend.

We hope to see you and your family at our first ever DIGITAL Annual Family Conference & Interactive Workshop, the more the merrier! If you are wanting to attend the 2020 Conference 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.