Light Up for Rare Disease Day

If you’re an advocate for those affected by rare diseases like Niemann-Pick, then you will likely want to do all you can to promote and amplify the rare voice this coming Rare Disease Day (29th February 2024).

One way in which communities can make a big splash is by lighting up buildings and structures in the rare colours (green, pink, purple, and light blue) to show solidarity. World famous sites like Rome’s Colosseum, the Burj Khalifa in Dubai, take part in the campaign…so why not your local areas too?

We’ve drafted the following letter/email template so you can contact your local councillors/organisers to try and get them on board:

Dear name/organisation,

I hope this message finds you well. I am reaching out to as a supporter and advocate on behalf of Niemann-Pick UK, a small charity that supports individuals and families affected by the rare disease, Niemann-Pick. With Rare Disease Day just around the corner on February 29th, we’re working hard to spread awareness and support for those facing these uncommon conditions – I trust you will want to do the same!

Rare diseases affect millions of people globally, yet they often fly under the radar compared to more common health issues. This lack of attention can mean delayed diagnosis, limited treatment options, and a sense of isolation for those affected and their loved ones.

Rare Disease Day is our chance to shine a spotlight on these conditions, to show our solidarity, and to push for more research and support. It’s a day when communities around the world come together to make a difference.

We believe that change starts right here at home, which is why we’re reaching out to you. One impactful way to show support is by lighting up buildings/statues with the RDD coloured lights on February 29^th (green, pink, purple, and light blue). It’s a simple gesture, but it means a lot to those affected by rare diseases. It’s a sign that our community cares, that we’re here to support each other, no matter what.

So, we’d love it if you could consider joining us in lighting up [LOCATION]. It’s a small thing that can make a big difference, showing that our community is one of compassion and understanding.

Thank you so much for taking the time to read this, and for considering this request. If you have any questions or need more information, please don’t hesitate to get in touch with myself or NPUK directly at info@npuk.org.

We’re really looking forward to the possibility of working together to make Rare Disease Day special for everyone.

Warmest regards,

Your name