Allies and Guardians: Rare Siblings

In recognition of Rare Disease Day, I wondered what I could contribute. Then it came to me, as I was travelling from France to the UK for a medical appointment with my son, and my 11-year-old daughter in tow. The effect that disabilities have on siblings. I am lucky; my son’s disability is not that profound, but there is no doubt that it does affect family life, both negatively and positively.

The Forgotten Warriors: Celebrating the Siblings Behind Every Rare Disease Journey

From personal experience, siblings of those with disabilities are the most devoted allies and unwavering supporters. They cheer the loudest, worry the deepest, and love without condition. Yet all too often, they go unseen.

On Rare Disease Day (albeit a few days late), we should shine a light on a group who deserve far more than a footnote, the siblings of those living with a rare disease.

A Different Kind of Childhood

Growing up alongside a sibling with a rare disease is a profound experience, and one that shapes every corner of daily life. Making plans for tomorrow is never straightforward when everything can change in a moment. Friendships can feel complicated when intrusive questions and sometimes bullying become part of the landscape. The things that many children take for granted, such as socialising, sleepovers, and spontaneous days out, can feel just out of reach.

These siblings carry extra responsibilities and face real limitations, often quietly and without complaint. What they crave most, more than anything, is simply one-to-one time with their parents.

And then there are the nights. Behavioural and sleep disturbances can ripple through the whole family, leaving siblings exhausted, struggling to concentrate, and falling behind at school. This is not because they aren't trying, but because they are running on empty.

The Weight That Grows With Them

As siblings grow older, so does the weight they carry. The worries that a younger child might not yet have words for become impossible to ignore as a teenager or young adult. Concerns about their sibling's health and an uncertain future can take a profound toll on mental health. Yet many stay silent, not wanting to add to their parents' burden by voicing fears they worry will cause more pain. Some give up college places. Some reshape entire career paths. Some find that building their own adult life, meeting a life partner, putting down roots, is quietly, painfully complicated.

This is not rare. This is the reality for countless families worldwide.

What the Data Tells Us

According to Rare Revolution Magazine (2022) (https://rarerevolutionmagazine.com), 50% of siblings living in rare disease families report receiving no additional targeted support from their school. Half! Despite the tiredness, lateness, missed days, and the invisible weight they carry through the school gates every morning.

When younger siblings are asked to describe their brother or sister with a rare disease, the most common word is "fun." But ask those over 17, and the words shift to "challenging" and "worrying" rise to the top. That transition tells its own quiet story.

Sibling First. Rare Second.

Here is what we must never lose sight of: a rare disease does not define these young people. They are siblings first. And being part of a rare family, for all its challenges, also builds something extraordinary.

These siblings develop empathy, tolerance, and acceptance in ways that set them apart. They become advocates, explainers, and allies, helping the world around them understand what most will never encounter. Many go on to careers in health or social care, driven by lived experience and a deep desire to give back.

The bond between a rare sibling and their brother or sister is often deeper, more layered, and more resilient than many will ever know.

What Siblings Need From Us

Visibility. That is where we start. Siblings need to feel seen, valued, and supported, not as an afterthought, but as central to the rare disease conversation.

That means schools recognising that a tired, late, or struggling child may be carrying something heavy at home. It means sibling support groups, camps, and communities that provide spaces where they can be with others who truly understand, no explanation needed. It means charities doing the vital work of wrapping support around these families.

It means all of us doing better.