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The one in a million pretender

Patient Experience

The one in a million pretender

My journey to a mast cell activation syndrome diagnosis

Patient Experience

My journey to a mast cell activation syndrome diagnosis

PSP, a rare disease? I hope knot!

Patient Experience

PSP, a rare disease? I hope knot!

Reconfiguration of UK Rare Disease Forum

News

Reconfiguration of UK Rare Disease Forum

Patient Empowerment Group calls for coordination in England

News

Patient Empowerment Group calls for coordination in England

I have a rare condition called Lipid Lipase Deficiency, or LPLD.

Patient Experience

I have a rare condition called Lipid Lipase Deficiency, or LPLD.

7 things I don’t have to tell my GP about rare conditions

Guest Blog

7 things I don’t have to tell my GP about rare conditions

Patient Perspective on the Rare Disease Day Parliamentary Reception

Patient Experience

Patient Perspective on the Rare Disease Day Parliamentary Reception

Rare Disease Day 2016 - Westminster Reception

News

Rare Disease Day 2016 - Westminster Reception

Alison's speech from the inaugural meeting of the APPG on rare, genetic and undiagnosed conditions

Guest Blog

Alison's speech from the inaugural meeting of the APPG on rare, genetic and undiagnosed conditions

Delivering for patients with rare diseases: Implementing a Strategy

News

Delivering for patients with rare diseases: Implementing a Strategy

Launch of the All Party Parliamentary Group on rare, genetic and undiagnosed conditions

News

Launch of the All Party Parliamentary Group on rare, genetic and undiagnosed conditions

Don't headbutt your situation. Outsmart it and try to be positive.

Guest Blog

Don't headbutt your situation. Outsmart it and try to be positive.

Why is co-ordinated care so important in rare disease?

Guest Blog

Why is co-ordinated care so important in rare disease?

Lisa Beaton on her experience of speaking at the RDUK AGM

Guest Blog

Lisa Beaton on her experience of speaking at the RDUK AGM

We have our beginning, and our middle, but no ending…yet

News

We have our beginning, and our middle, but no ending…yet

The Rare Reality - An insight into the patient and family experience of rare disease: report launch

News

The Rare Reality - An insight into the patient and family experience of rare disease: report launch

Non-24-Hour Sleep-Wake Disorder: when night and day keep changing

Patient Experience

Non-24-Hour Sleep-Wake Disorder: when night and day keep changing

Gillian’s story – attending a professional conference

Patient Experience

Gillian’s story – attending a professional conference

The Rare Disease Implementation Plan for Northern Ireland has been launched

News

We are delighted to announce that last week Simon Hamilton, the Northern Ireland Executive Health Mi…

Dylan's Story: Our little puzzle

Patient Experience

Dylan's Story: Our little puzzle

APPG on rare, genetic & undiagnosed conditions: Open Letters

News

APPG on rare, genetic & undiagnosed conditions: Open Letters

Imogen's story - Myhre Syndrome

Patient Experience

Imogen's story - Myhre Syndrome

Dear Whoever

Guest Blog

Dear Whoever

Patients without a diagnosis are often overlooked but we want to give them a voice in parliament

News

Patients without a diagnosis are often overlooked but we want to give them a voice in parliament

Heather’s Story

Patient Experience

Heather’s Story

For seven years Lewis had no diagnosis

Patient Experience

For seven years Lewis had no diagnosis

Kristy's story: HTLV-1

Patient Experience

Kristy's story: HTLV-1

One in a million - Cyclical Neutropenia

Patient Experience

One in a million - Cyclical Neutropenia

Blog for Rare Disease UK

Guest Blog

Blog for Rare Disease UK

Gianna's story - Not just one rare condition

Patient Experience

Gianna's story - Not just one rare condition

Natalie's Story - Autoimmune neutropenia (AIN)

Patient Experience

I hope that my story will give you a small insight into the journey of living with someone with a ra…

Philippa’s Story: Living with Superior Semicircular Canal Dehiscence Syndrome

Patient Experience

Philippa’s Story: Living with Superior Semicircular Canal Dehiscence Syndrome

Patient Experiences

Patient Experience

Patient Experiences

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