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The challenge of being ‘Rare’

We live in an exciting time when new treatments for PWS are tantalisingly close. New insights pave the way for future treatments and new knowledge helps inform the quality of care and treatment we can provide for our loved ones. PWS remains a devastating diagnosis, albeit one, which many of us discover is not as life limiting for our child as we feared when said diagnosis was first given. None the less there is no denying a PWS diagnosis still carries significant challenges, limitations and worries. Research into the condition is a challenge because unsurprisingly PWS is classed as a ‘rare disease’ due to its approximate occurrence of 1 in 15,000.

Once upon a time ago I barely thought about where the funds came from for any sort of research into medical conditions. I just assumed that research was something that happened and I was probably naïve enough to think it was something that governments did. I now know that is not the case. I also now know PWS is just one of many rare diseases that has to complete for funds and the publics attention and not just with each other, but against other, far better known conditions and charitable causes.

It can feel like a lonely place in ‘rare’; you don’t have the profile, you don’t have well known figure heads championing your cause. Instead you have to fight for funds and to get the attention. That is why it is so important we continue to raise awareness and why the support of our community into continued research is vital. Whilst we might not have the profile of other causes we do have an extremely motivated community which has gotten us to where we are now and will continue to help us push towards our eventual goal of eliminating the challenges of PWS.

 There are many ways you can help from donations to fundraisers. To help contribute towards a brighter future please get involved.