News & Events

Stay up-to-date with SWAN UK news and events and check out our family stories and blog pieces from SWAN UK members.                                      

You can also find out more by joining the SWAN UK mailing list!

All / Events / Family Story / Guest blog / News / Press /

Worth the wait?

Guest Blog

Worth the wait?

Christmas outing to Adventure Island

Events

Christmas outing to Adventure Island

Dreams Really Can Come True!

Guest Blog

 Dreams Really Can Come True!

Is there any help out there?

Guest Blog

Is there any help out there?

An update - Four weeks after VNS Surgery

Guest Blog

 An update - Four weeks after VNS Surgery

Give back Friday

News

Give back Friday

My #TravelStories

Guest Blog

My #TravelStories

Dear Health care professionals

Guest Blog

Dear Health care professionals

SWAN UK Christmas trip to Sundown Adventureland

Events

SWAN UK Christmas trip to Sundown Adventureland

SWAN UK coffee mornings

News

SWAN UK coffee mornings

Give while you sip

News

Give while you sip

Roo's story

Family Story

Roo's story

Kidz to Adultz North

Events

Kidz to Adultz North

Help develop pain management app for your children

News

Help develop pain management app for your children

Fundrasing hall of fame

News

Fundrasing hall of fame

Vote for me?

Guest Blog

Vote for me?

The invisible boy

Guest Blog

The invisible boy

Blue door number one

Guest Blog

Blue door number one

Warrington Sensory Play family meet up

Events

Warrington Sensory Play family meet up

Longleat Safari Park

News

Longleat Safari Park

Dad dash

News

Dad dash

VNS - The Surgery

Guest Blog

VNS - The Surgery

Answering your questions about the 100,000 Genomes Project

News

Answering your questions about the 100,000 Genomes Project

Summertime sadness

Guest Blog

Summertime sadness

Waiting for VNS surgery

Guest Blog

Waiting for VNS surgery

Family day out at Cotswold wildlife Park

News

Family day out at Cotswold wildlife Park

Life of a rural swan

Family Story

Life of a rural swan

When is accessible not accessible?

Guest Blog

When is accessible not accessible?

Virgin Money London Marathon

Events

Virgin Money London Marathon

Northern Ireland families visit Tayto Park

News

Northern Ireland families visit Tayto Park

The unexpected

Guest Blog

The unexpected

Broken sweetness

Guest Blog

Broken sweetness

Eiden

Family Story

Eiden

SWAN UK secures three year grant from the Big Lottery Fund

Press

SWAN UK secures three year grant from the Big Lottery Fund

Twitter Takeover on 100,000 Genomes Project eligibility

Events

Twitter Takeover on 100,000 Genomes Project eligibility

Case study: Georgia

Press

Case study: Georgia

The Impact of an Undiagnosed Condition

Family Story

The Impact of an Undiagnosed Condition

Are you eligible for the 100,000 Genomes Project

News

Are you eligible for the 100,000 Genomes Project

Dear Mrs May

Guest Blog

Dear Mrs May

The Midlands Rare Disease Showcase

Events

The Midlands Rare Disease Showcase

Emma Murphy talks at the House of Fraser Annual Charity Event

News

Emma Murphy talks at the House of Fraser Annual Charity Event

SWAN UK receives funding from House of Fraser’s Annual Charity Event

News

SWAN UK receives funding from House of Fraser’s Annual Charity Event

Roald Dahl 100 Tea Party

Events

Roald Dahl 100 Tea Party

Fun on the farm

News

Fun on the farm

Family day out at Wheelgate Adventure Park

News

Family day out at Wheelgate Adventure Park

Questions and answers

Family Story

Questions and answers

Celebrating at Thomas Cook's 175th Birthday

News

Celebrating at Thomas Cook's 175th Birthday

The Big Build - Birmingham Style

Guest Blog

The Big Build - Birmingham Style

Trolley? What trolley?

Guest Blog

Trolley? What trolley?

Like a small boat on the ocean

Guest Blog

Like a small boat on the ocean

IMAGINE ID Research Opportunity

News

IMAGINE ID Research Opportunity

Siblings make friends at Paultons Park

News

Siblings make friends at Paultons Park

Smiles all round at Birmingham Children's Hospital

News

Smiles all round at Birmingham Children's Hospital

Teamwork Is Important

Guest Blog

Teamwork Is Important

Tales of the unexpected - Jack's story so far

Family Story

Tales of the unexpected - Jack's story so far

IT TAKES (MORE THAN) A VILLAGE TO RAISE A CHILD (WITH AN UNDIAGNOSED GENETIC CONDITION)

Guest Blog

IT TAKES (MORE THAN) A VILLAGE TO RAISE A CHILD (WITH AN UNDIAGNOSED GENETIC CONDITION)

This boy does bounce

Guest Blog

This boy does bounce

Office Olympics fundraising

News

Office Olympics fundraising

Sweepstake Fundraising

News

Sweepstake Fundraising

Escape!

Guest Blog

Escape!

Football Fundraising Fun

News

Football Fundraising Fun

London Color Run

Events

London Color Run

Gavin raises over £3000 for SWAN UK

News

Gavin raises over £3000 for SWAN UK

Blindsided

Family Story

Blindsided

Joel

Family Story

Joel

Paultons Park Visit

News

Paultons Park Visit

Emily Buckley's talk at Undiagnosed Genetic Conditions Information Event

News

Emily Buckley's talk at Undiagnosed Genetic Conditions Information Event

#Undiagnosed Children’s Day 2016 (the video)

Guest Blog

#Undiagnosed Children’s Day 2016 (the video)

Undiagnosed Children's Day 2016: A call for coordinated care

Guest Blog

Undiagnosed Children's Day 2016: A call for coordinated care

Undiagnosed – A Life in Limbo

News

Undiagnosed – A Life in Limbo

A very special day in the undiagnosed community

Family Story

A very special day in the undiagnosed community

On how life is just one big Uncertainty. Which isn’t always ok…

Guest Blog

On how life is just one big Uncertainty. Which isn’t always ok…

Wonderfully Weird

Guest Blog

Wonderfully Weird

FRUSTRATION, SWEARING AND TEARS….

Guest Blog

FRUSTRATION, SWEARING AND TEARS….

Welcome to no man's land #undiagnosed

Guest Blog

Welcome to no man's land #undiagnosed

Twelve months on…

Guest Blog

Twelve months on…

Shoulda, Woulda, Coulda

Guest Blog

Shoulda, Woulda, Coulda

Past, Present, Future

Guest Blog

Past, Present, Future

Introducing our new Fundraising Officer!

News

Introducing our new Fundraising Officer!

Beans, Beans the musical fruit!

Guest Blog

Beans, Beans the musical fruit!

Don’t worry be happy

Guest Blog

Don’t worry be happy

Slipping through the cracks

Guest Blog

Slipping through the cracks

Life With The Backward Lad

Guest Blog

Life With The Backward Lad

Today in Westminster

News

Today in Westminster

Long Faces, Frayed Knots and Loose Ends

Guest Blog

Long Faces, Frayed Knots and Loose Ends

LOOKING BACK, LOOKING FORWARD

Guest Blog

LOOKING BACK, LOOKING FORWARD

Sibling Story - Joshua

Family Story

Sibling Story - Joshua

Living in limbo

Guest Blog

Limbo

Pronunciation: /ˈlɪmbəʊ/ An uncertain period of awaiting a decision or resolution; an interme…

Pin a dirty nappy on the door

Guest Blog

Pin a dirty nappy on the door

Undiagnosed Children’s Day event at Birmingham Children’s Hospital

Events

As part of our Undiagnosed Children’s Day celebrations we are excited to invite children, young peop…

Support SWAN UK on social media this Undiagnosed Children’s Day

News

Support SWAN UK on social media this Undiagnosed Children’s Day

On how life is just one big Uncertainty. Which isn’t always ok…

Guest Blog

On how life is just one big Uncertainty. Which isn’t always ok…

Belong.

Guest Blog

Belong.

Labels

Guest Blog

 

I often hear from the media or professionals that “we shouldn’t label children” and this gets me …

Undiagnosed Children's Day Friday 29 April 2016

Events

Undiagnosed Children’s Day is a nationwide event on Friday 29 April to increase awareness of undiagn…

Bigger, better, bolder

Guest Blog

Bigger, better, bolder

Out of the Box

Guest Blog

Campaigning for Co-ordinated Care for Children with Undiagnosed Genetic Conditions

As GG’s mother, …

Undiagnosed Genetic Conditions Information Event

Events

As part of our Undiagnosed Children’s Day celebrations we will be having an information event for pa…

Fate

Family Story

I’m at a cheer leading competition with our non swan. Our normal healthy neuro-typical nearly 18-yea…

Acceptance, the destination for 2016

Guest Blog

Acceptance, the destination for 2016

Energy Assets fundraise for SWAN UK

News

Energy Assets fundraise for SWAN UK

Stuck in the Waiting Room

Guest Blog

A few months ago now we arrived at Jacob’s holiday club venue too early, so rather than wait in the …

Leaves on the line, and other reasons for delay.

Guest Blog

Leaves on the line, and other reasons for delay.

Teaming up with Thomas Cook Children's Charity

Press

Teaming up with Thomas Cook Children's Charity

6,000 children are born in the UK each year with a syndrome without a name

News

Undiagnosed Children’s Day is a nationwide event to increase awareness of children with undiagnosed …

Undiagnosed Children’s Day – Stay in the know

News

The legal bit!

We are delighted so many people are getting on board to fundraise for undiagnosed ch…

Undiagnosed Children’s Day – Recipe for Putting the ‘Fun’ in Fundraising!

News

The 29th of April is Undiagnosed Children’s Day – a nationwide event to increase awareness of undiag…

How you can get involved in Undiagnosed Children’s Day

News

How you can get involved in Undiagnosed Children’s Day

Undiagnosed Children’s Day 2016 press release

Press

There are just over six weeks to go until Undiagnosed Children’s Day!

Please have a look at our pre…

Seven weeks until Undiagnosed Children’s Day!

News

This year our fourth Undiagnosed Children’s Day is taking place on Friday 29 April.

Undiagnosed Chi…

Undiagnosed Children’s Day 2016 – fundraising pack

News

Undiagnosed Children’s Day is a nationwide event to increase awareness of undiagnosed genetic condit…

Emma’s talk on Rare Disease Day

News

Hi, my name is Emma and I’m a mum to two young boys aged seven and nearly six.

I’ve been asked to t…

Alison goes to Westminster

News

Alison goes to Westminster

D-Day… red shoes part 2…

Guest Blog

D-Day… red shoes part 2…

Put on your red shoes ...

Guest Blog

Put on your red shoes ...

Adulting

Guest Blog

Adulting

Lisa talks at Rare Disease UK's AGM

News

Lisa talks at Rare Disease UK's AGM

The Job Centre

Family Story

The Job Centre

White Collar Boxing!

News

White Collar Boxing!

Introducing Felix

Family Story

Introducing Felix

Introducing Roo

Family Story

Introducing Roo

Introducing Indy - Miss Moo!

Family Story

Introducing Indy - Miss Moo!

Isie is the face of shopping centre campaign

News

Isie is the face of shopping centre campaign

Kian's Story

Family Story

Kian's Story

Theo's Story

Family Story

Theo's Story

Sibling Stories - Saffron

Family Story

Sibling Stories - Saffron

My family - life as a single SWAN parent

Family Story

My family - life as a single SWAN parent

Our open letters to our MPs

News

Our open letters to our MPs

All Party Parliamentary Group Q&A

News

All Party Parliamentary Group Q&A

Dylan - A Poem

Family Story

At the 20 week scan and right from the start
They noticed something was different about your heart
The…

We need your help: contact your MP

News

Help raise awareness of rare, genetic and undiagnosed conditions in parliament by asking your MP to …

Man on a Mission!

News

Man on a Mission!

Sam's Story

Family Story

Sam's Story

Maddie's Story

Family Story

Maddie's Story

Benjamin's First Year.

Family Story

We were 38 weeks into an uneventful pregnancy, excited about the prospect of meeting our second chil…

Rowan's Story

Family Story

Rowan's Story

Olivia's Story

Family Story

Olivia's Story

Big Brother

Family Story

Once, I never thought I would ever be able to be a mum after being told I would never have children …

adfsgasd

Family Story

gadsgafdh

Join our community of families

Join us