Rare Diseases Day 2026 

A message from Chair of the Community Advisory Panel, Kirsty Whitehead, for Rare Disease Day:

There Is No “Mild” When You Live With the Unknown

Around the world, people are marking Rare Disease Day. And within the Neurofibromatosis (NF) community, I suspect there are many who quietly feel like they don’t quite fit.

They don’t fit the Rare Disease Day box. They don’t fit the NDIS box. They don’t feel “sick enough” for the fundraising campaigns. They don’t feel their story is severe enough to speak out. 

 I know that feeling, because I’ve felt it too. I am a mum to Shelby and Jackson, both diagnosed with NF type 1. Our journey has been uncertain from the beginning. They have faced surgeries we weren’t sure they would survive. Shelby underwent major surgery during COVID, when we were told there was a real risk she might not come back to us. Now she faces a spinal tumour. Jackson lives with concerns around his neck following scoliosis surgery. This week I was speaking with clinicians about his optic gliomas acknowledging how “lucky” we are that he still has some of his sight, that he didn’t require chemotherapy, knowing full well what could have been… and what, with NF, may still be.

And in that moment, I realised something. I was doing the very thing I often gently tell other NF families not to do. I was downplaying our experience. Yes, we are lucky in many ways. Yes, we know others carry heavier medical burdens. But what we have been through is still hard. It is still painful. And it is still lonely at times. 

Living with NF means living with uncertainty. Even in the quiet seasons. Even in the “mild” cases.

For me, the weight of that uncertainty showed itself unexpectedly. I never allowed myself to truly hope for Shelby’s future — it felt too risky, too painful. But then there she was at her formal, standing in her dress, beaming. And as she smiled, an entire community beamed with her. In that moment I realised how much I had been bracing for the worst instead of allowing space for hope.

NF is not one story. It is thousands. You may not have visible tumours. You may not have learning difficulties. You may not experience the most severe complications others face.

And while you can hold gratitude for that, you may still live with low muscle tone that quietly drains your energy. You may live with chronic pain that others don’t see. You may carry the emotional weight of scans, appointments, waiting rooms, and “let’s just monitor it.” You may lie awake watching for new spots, new growths, small changes that could mean something.v

You may have what the world calls a “mild” case. But there is nothing mild about carrying the unknown. Rare Disease Day is not about comparison. It is about recognition.

Neurofibromatosis may be the most common genetic neurological condition, but it is still rare. And every experience of it is unique. Severity differs. Complications differ. The psychosocial impact differs. But no one walks this path untouched. 

So today, if you have ever felt like your story isn’t “enough” to be heard: it is. If you have felt guilty for struggling because someone else’s journey looks harder: your feelings are still valid.  If you are quietly carrying the weight of uncertainty: I see you. 

And for those living with the rarest forms of NF, like NF2 and SWN, we especially see you today.

You are not alone in this.

Every NF journey deserves space.

Every experience deserves acknowledgment. 

Every story matters.

#RareDiseaseDay #Shareyourcolours #Morethanyoucanimagine

 ❤️💙💚💜

Learn more about Rare Disease Day