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  • Genetic Alliance UK /
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  • Guest Blogs

SWAN UK trip to Sundown Adventureland

SWAN UK trip to Sundown Adventureland

INTRODUCING: SWAN IRELAND

INTRODUCING: SWAN IRELAND

It’s OK to not be OK

It’s OK to not be OK

More than carers

More than carers

Cycling to Paris for SWAN UK

Cycling to Paris for SWAN UK

Wandering down a long, lonely road

Wandering down a long, lonely road

Finally a diagnosis?

Finally a diagnosis?

A marathon in a month

A marathon in a month

In a different life

In a different life

Dear Doctor

Dear Doctor

Journey to diagnosis: Tilly

Journey to diagnosis: Tilly

SWAN UK ADVENTURES

SWAN UK ADVENTURES

THE HOLIDAYS WITH LIMITS.

THE HOLIDAYS WITH LIMITS.

SURVIVING THE DREADED SUMMER HOLIDAYS…

SURVIVING THE DREADED SUMMER HOLIDAYS…

Firsts

Firsts

Sometimes I just don’t know who to call …

Sometimes I just don’t know who to call …

The hidden depths of the NHS

The hidden depths of the NHS

My Star of the NHS. I Salute You.

My Star of the NHS. I Salute You.

Who cares for the carers?

Who cares for the carers?

Bella Is My Superhero

Bella Is My Superhero

Rarely Outspoken

Rarely Outspoken

Answers

Answers

Our first Christmas and New Year without Lennon

Our first Christmas and New Year without Lennon

The day the world began to shrink

The day the world began to shrink

What should a four-year-old be?

What should a four-year-old be?

Alternative advent: a sensory countdown to Christmas

Alternative advent: a sensory countdown to Christmas

Being a swan

Being a swan

A Superhero for a Brother

A Superhero for a Brother

The Big Little Sister

The Big Little Sister

Sharing our undiagnosed story with the professionals

Sharing our undiagnosed story with the professionals

Hospice Care Week – Changing perceptions.

Hospice Care Week – Changing perceptions.

The ocean’s in motion

The ocean’s in motion

Keeping us out

Keeping us out

Gone camping (again)

Gone camping (again)

The second drowning

The second drowning

An Introduction

An Introduction

Becoming Alex

Becoming Alex

We are the 57%

We are the 57%

Failing

Failing

Three Little Birds

Three Little Birds

Leaves on the line, and other reasons for delay.

Leaves on the line, and other reasons for delay.

The Unscratchable Itch.

The Unscratchable Itch.

Back when I ‘just knew’

Back when I ‘just knew’

AN ODE TO A SPECIAL DAD

The realisation that a diagnosis doesn’t always give you answers

The realisation that a diagnosis doesn’t always give you answers

Answers

Answers

To the other mother…

To the other mother…

‘There are known knowns’ …

‘There are known knowns’ …

Into the unknown: life with an #undiagnosed child

Into the unknown: life with an #undiagnosed child

Undiagnosed: Unexpected but not unusual

Undiagnosed: Unexpected but not unusual

Misfit

Misfit

To the parent of a newly undiagnosed child

To the parent of a newly undiagnosed child

Not Knowing Why

Not Knowing Why

WHAT DO SWAN MOTHERS DO? ESPECIALLY WHEN IT LOOKS LIKE NOTHING…

WHAT DO SWAN MOTHERS DO? ESPECIALLY WHEN IT LOOKS LIKE NOTHING…

Undiagnosed Children’s Day Instagram Challenge – Day 2 #My Diary

Undiagnosed Children’s Day Instagram Challenge – Day 2 #My Diary

Undiagnosed Children’s Day Instagram Challenge – Day 1 #selfie

Undiagnosed Children’s Day Instagram Challenge – Day 1 #selfie

WHAT WAS I THINKING? THE ROOKIE MISTAKE OF A SN PARENT.

WHAT WAS I THINKING? THE ROOKIE MISTAKE OF A SN PARENT.

Having a right to play?

Having a right to play?

Reality and the fear of reality

Reality and the fear of reality

The future?

The future?

The ‘P’ word

The ‘P’ word

Delivering a diagnosis

Delivering a diagnosis

When 20 pairs of eyes are all on you

When 20 pairs of eyes are all on you

Transition (part 1)

Transition (part 1)

Being undiagnosed. Was it my fault?

Being undiagnosed. Was it my fault?

Neither beginning nor ending be … and other lessons

Neither beginning nor ending be … and other lessons

Happy You Year

Happy You Year

Best laid plans

Best laid plans

Friendship after loss

Friendship after loss

Blofest 16 and the SWAN UK bloggers

Blofest 16 and the SWAN UK bloggers

Worth the wait?

Worth the wait?

Dreams Really Can Come True!

Dreams Really Can Come True!

Is there any help out there?

Is there any help out there?

An update – Four weeks after VNS Surgery

An update – Four weeks after VNS Surgery

My #TravelStories

My #TravelStories

Dear Health care professionals

Dear Health care professionals

Vote for me?

Vote for me?

The invisible boy

The invisible boy

Blue door number one

Blue door number one

VNS – The Surgery

VNS – The Surgery

Summertime sadness

Summertime sadness

Waiting for VNS surgery

Waiting for VNS surgery

When is accessible not accessible?

When is accessible not accessible?

The unexpected

Broken sweetness

Broken sweetness

Dear Mrs May

Dear Mrs May

Trolley? What trolley?

Trolley? What trolley?

The Big Build – Birmingham Style

The Big Build – Birmingham Style

Like a small boat on the ocean

Like a small boat on the ocean

Teamwork Is Important

Teamwork Is Important

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

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

This boy does bounce

This boy does bounce

Escape!

Escape!

#Undiagnosed Children’s Day 2016 (the video)

#Undiagnosed Children’s Day 2016 (the video)

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

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

Wonderfully Weird

Wonderfully Weird

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

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

FRUSTRATION, SWEARING AND TEARS….

FRUSTRATION, SWEARING AND TEARS….

Past, Present, Future

Past, Present, Future

Shoulda, Woulda, Coulda

Shoulda, Woulda, Coulda

Twelve months on…

Twelve months on…

Welcome to no man’s land #undiagnosed

Welcome to no man’s land #undiagnosed

Beans, Beans the musical fruit!

Beans, Beans the musical fruit!

Don’t worry be happy

Don’t worry be happy

Slipping through the cracks

Slipping through the cracks

Life With The Backward Lad

Life With The Backward Lad

LOOKING BACK, LOOKING FORWARD

LOOKING BACK, LOOKING FORWARD

Long Faces, Frayed Knots and Loose Ends

Long Faces, Frayed Knots and Loose Ends

Pin a dirty nappy on the door

Pin a dirty nappy on the door

Living in limbo

Belong.

Belong.

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

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

Labels

Bigger, better, bolder

Bigger, better, bolder

Out of the Box

Acceptance, the destination for 2016

Acceptance, the destination for 2016

Stuck in the Waiting Room

D-Day… red shoes part 2…

D-Day… red shoes part 2…

Put on your red shoes …

Put on your red shoes …

Adulting

Adulting

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Information

  • What is a syndrome without a name?
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  • Undiagnosed – a documentary

Genetic Alliance UK provides the secretariat for the following parliamentary groups on Rare, Genetic and Undiagnosed Conditions:

  • The Westminster All-Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions
  • The Scottish Parliament Cross-Party Group on Rare, Genetic and Undiagnosed Conditions
  • The Welsh Assembly Cross-Party Group on Rare, Genetic and Undiagnosed Conditions

Ethical Collaboration Policy | Privacy Policy | Complaints Policy | Donation Policy | Disclaimer

© Genetic Alliance UK 2018

SWAN UK is a support network run by the charity Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.

 

Genetic Alliance UK registered charity numbers: 1114195 & SC039299.

 

Registered company number: 05772999