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About Immunodeficiency UK

• Our mission
• Values
• Our Trustees
  • Dr Matthew Buckland
  • Hannah Bruce
  • Lisa Gagliani MBE
  • Valerie Brisse-Uhlig
  • Diane Hammond
  • Jane Shepard
  • Tamara Moubazbaz
• Change of identity from PID UK to Immunodeficiency UK
• Our team
  • Susan Walsh
  • Fay Fagon
• Patient representative panel
  • Role of patient representative panel
  • Alison
  • Hannah
  • Patricia Hamilton
  • Marian Armstrong
  • Fiona Watt
  • Drew Tyne
  • Margaret Bennett
  • Carolyn Grundy
  • Claire Dyer
  • Samuel Davis
  • Stacey Garrity
• Medical advisory panel
  • Role of medical advisory panel
  • Dr Tasneem Rahman, Consultant Immunologist at Epsom & St Helier University Hospitals NHS Trust
  • Dr Lisa Devlin, Consultant Immunologist at the Regional Immunology Service, Belfast
  • Dr Aarn Huissoon, Consultant immunologist at University Hospitals Birmingham.
  • Mari Campbell
  • Lucy Common, Immunology and Allergy Advanced Clinical Nurse Specialist, Salford Royal Hospital.
  • Tariq El-shanawany
  • Tomaz Garcez
• Sponsors
  • CSL Behring
  • Grifols
  • Orchard Therapeutics
  • Amdel Medical Ltd
  • LFB Ltd
  • Jeffrey Modell Foundation
  • Shire
  • Jeans for Genes

What are PIDs?

• Patient stories
  • Stories of adults with PID
  • Parent and children stories
  • Stories of adults with SID
• The basics
• Types of PID
• Genetic aspects of PID
  • Booklet on genetics aspects of PID
• Symptoms and diagnosis
• Treatment
  • Immunoglobulin replacement therapy
  • Bone marrow transplantation
  • Gene therapy
  • Cell and Gene therapy - the future of medicine?
  • Thymus transplantation
  • Antibiotics
  • Faith issues and treatment for PIDs
  • Seeking private medical treatment in the UK from abroad
  • FAQs about the treatment of PIDs
• Management
  • DHSC vaccine update 17th January 2023
  • DHSC COVID-19 toplines and Q and A - November
  • National Clinical Expert Consensus Statement for Mab prophylactic therapy for COVID-19
  • Access to COVID-19 medicines infograph
  • Access to COVID Treatments
  • Keeping safe
  • Antibody testing after vaccination
  • COVID-19 vaccines and immunodeficiency
  • Dealing with stress and anxiety
  • Living with worry and anxiety
  • Keeping well and healthy when you have a PID
  • Norovirus and immunodeficiency
  • Immunisations
  • Travel tips and travel insurance
  • Moving to or visiting the UK when you have a PID
  • Coming to the UK to study
  • Zika virus
  • Sepsis
  • Lung health
  • Scarlet fever
  • Aspergillosis
  • MERS virus
  • Non-infectious complications of PIDs
  • Food safety advice
  • Reducing exposure to Cryptosporidial infection
  • Giardia infection and primary immunodeficiency
  • FAQs about the management of PIDs
• Research
  • COVID research
  • Genomics and immunodeficiency
  • Understanding access to medicines
  • Clinical trials and their different stages
  • Taking part in the 100,000 Genomes Project
  • Research Focus 2017
  • Taking part in research
  • PID Patient Registry
  • Stem Cell Transplantation
  • Strategies for tackling drug-resistant bugs
  • FAQs about research
• General FAQs about PIDs
• Secondary immunodeficiency FAQs
• Dictionary of terms

Specific PID conditions

• Primary antibody deficiencies
  • Selective IgA deficiency
  • X-linked agammaglobulinemia (XLA)
  • Common variable immune deficiency
  • Hyper IgM syndromes
  • IgG subclass deficiencies
  • Transient hypogammaglobulinemia
• Well defined syndromes
  • Hyper-IgE syndromes
  • Wiskott-Aldrich Syndrome
• Mannose-binding lectin (MBL) deficiency
  • MBL Deficiency booklet
  • MBL deficiency patient information sheet
  • Causes of MBL deficiency
  • Symptoms and diagnosis of MBL deficiency
  • Treatment of MBL deficiency
  • Associated issues in MBL deficiency
• Combined immunodeficiency in children
  • Combined immunodeficiency (CID) in children
  • Combined immunodeficiency patient information sheet
  • Causes of CID
  • Signs and symptoms of CID
  • Diagnosis of CID
  • Treatment of CID
  • Associated issues in CID
  • Corrective treatment of CID
• Severe combined immunodeficiency
  • Severe Combined Immunodeficiency booklet
  • Severe combined immunodeficiency patient information sheet
  • Causes of SCID
  • Signs and symptoms of SCID
  • Diagnosis of SCID
  • Treatment of SCID
  • Associated issues in SCID
  • Corrective treatment of SCID
  • SCID - future prospects
• X-linked SCID
  • X-linked SCID booklet
  • X-linked SCID patient information sheet
  • X-SCID and its causes
  • Signs, symptoms and diagnosis of X-SCID
  • Treatment of X-SCID
  • Genetic counselling and X-SCID
• Adenosine deaminase (ADA)-SCID
  • ADA-SCID booklet
  • ADA-SCID patient information sheet
  • ADA-SCID and its causes
  • Signs, symptoms and diagnosis of ADA-SCID
  • Treatment of ADA-SCID
  • Long term follow up in ADA-SCID
• Autoimmune lymphoproliferative syndrome
  • ALPS booklet
  • ALPS patient information leaflet
  • ALPS and its causes
  • Signs and symptoms of ALPS
  • Diagnosis and treatment of ALPS
• Haemophagocytic lymphohistiocytosis (HLH)
  • Haemophagocytic lymphohistiocytosis (HLH) booklet
  • HLH patient information sheet
  • HLH and its causes
  • Signs, symptoms and diagnosis of HLH
  • Treatment of HLH
  • Future prospects for HLH
• X-linked lymphoproliferative disorder
  • X-linked lymphoproliferative disorder (XLP1) booklet
  • XLP1 patient information sheet
  • XLP1 and its causes
  • Signs and symptoms of XLP1
  • Diagnosis of XLP1
  • Treatment of XLP1
  • Future prospects for XLP1
• X-linked inhibitor of apoptosis protein (XIAP) deficiency
  • X-linked inhibitor of apoptosis protein (XIAP) deficiency booklet
  • XIAP patient information sheet
  • XIAP and its causes
  • Signs and symptoms of XIAP deficiency
  • Diagnosis of XIAP deficiency
  • Treatment of XIAP deficiency
  • Future prospects for XIAP deficiency
• NEMO (nuclear factor-kappa B essential modulator) deficiency
  • NEMO booklet
  • NEMO patient information sheet
  • NEMO and its causes
  • Signs and sypmtoms of NEMO
  • Diagnosis and treatment of NEMO

Resources for patients, carers and professionals

• PID - the basics
• Primary Antibody Deficiency
• Switching immunoglobulin products
• Secondary Immunodeficiency
• Ageing and the immune system
• Keeping well and healthy
• Taking control of your healthcare
• Making the most of your appointments
• Going on holiday
• Insurance matters
• Your employment rights
• Life insurance
• Being a carer
• Working wth your GP
• Immunoglobulin therapy for adults
• Immunoglobulin therapy guide for parents
• Immunoglobulin therapy guide for young people
• Antibiotics in PID
• Genetic aspects of PID
• Looking after your lungs
• Bone marrow transplant for immunodeficiency
• CVID booklet
• XLA booklet
• Combined immunodeficiency (CID) in children
• Selective IgA deficiency booklet
• Mannose-binding lectin deficiency booklet
• IgG subclass deficiencies booklet
• Complement deficiency
• Hyper IgE syndromes
• Neutrophil disorders
• Hyper IgM syndromes
• Transient hypogammaglobulinemia of infancy booklet
• Wiskott Aldrich Syndrome booklet
• Severe Combined Immunodeficiency
• X-linked Severe Combined Immunodeficiency
• ADA-SCID
• Autoimmune lymphoproliferative syndrome
• Haemophagocytic lymphohistiocytosis (HLH)
• X-linked lymphoproliferative disorder (XLP1)
• X-linked inhibitor of apoptosis protein (XIAP) deficiency
• NEMO deficiency
• Plasma derived therapy
• When to give immunoglobulin replacement therapy
• Immunoglobulin replacement therapy: One size doesn't fit all
• Guide for GPs
• SCIG Infusion – a practical guide for patients
• PID and allergies
• PID and infections
• Targeted therapies for PID
• PID and psychological management
• Transition
• CVID management
• Vaccines and PID
• Haematopoietic stem cell transplantation
• ADPS - Activated PI3K Delta Syndrome
• Ataxia
• WHIM Syndrome
• Diagnosis of PID
• Stay healthy
• Classification of PID
• Management after diagnosis
• Newborn screening for SCID
• Guide for internal specialists
• Guide for schools
• PIDs and respiratory disorders
• PIDs and gastrointestinal disorders
• PIDs and Skin
• PID and cancer
• PIDs in adults
• Rheumatological, autoimmune & autoinflammatory crossovers
• A Guide for Gastroenterologists
• Treatment for PIDs
• Autoimmunity and inflammation
• Guide for Pulmonologists
• Guide for Hepatologists

Useful contacts and links

• Find a clinical immunologist
• UK patient organisations
  • Action for A-T
  • Ataxia UK
  • Ataxia-Telangiectasia (A-T) Society
  • Aspergillus Patient Support
  • HAE (Hereditary Angioedema) UK
  • Max Appeal!
  • Scottish Paediatric & Adolescent Infection & Immunology Network
  • Wiskott–Aldrich Foundation
  • XLP (X-linked lymphoproliferative syndrome) Research Trust
• International support groups
• Professional organisations
• Pharmaceutical companies

Living with primary immunodeficiency

• Working with your GP
  • How to work with your GP Practice
  • A guide for general practitioners
• Newly diagnosed
  • Diagnosis of a child
• For parents of children with PIDs
  • Telling children about a genetic condition
  • Counselling and Emotional Support
  • Wishes and Dreams
  • Ig therapy guide for parents
  • Parent and children stories
  • Getting the best out of healthcare
  • Education
  • Care of your child in hospital
  • Rights of working parents
  • How employers can help
  • Working with local services
  • Being a carer
  • Claiming benefits
  • Attending a tribunal
  • Disability and Immunodeficiency
  • General FAQs
• For children and young people with PIDs
  • Need to talk?
  • Young person's guide to Ig therapy
  • Victoria's story
  • A young person’s perspective on living with PID
  • Don't let having a PID limit what you do!
  • Medikidz explain Primary Immunodeficiency
  • Resources for children and young people
• For adults with PIDs
  • 'Living with Covid-19': talking about workplace safety with your employer
  • Making a plan - my story
  • Working from home - letter for employees
  • Living with the threat of COVID - my approach
  • Helping people return to work after shielding: a guide for employers and work colleagues.
  • Ageing and the immune system
  • Life insurance
  • Counselling and Emotional Support
  • PIDs and your employment rights FAQs
  • Prescription charges and immunodeficiency
  • Making the most of your appointments
  • Leaving hospital: a checklist
  • How to make a complaint about healthcare
  • Getting a second opinion
  • Claiming Personal Independence Payment
  • Employment and Support Allowance
  • Universal credit
  • Attendance Allowance
  • Attending a tribunal
  • Motability and the Blue Badge
• For carers
  • Caring for a partner with a chronic illness
  • Carer’s Allowance
  • Bereavement support
• FAQs about benefits

Advocacy

• Challenge letter to NICE: decison on Leniolisib for the treatment of APDS
• Letter to DHSC regarding prescription charges for COVID-19 anti-virals
• Letter to UKHSA chief Dame Jenny Harries - ONS COVID-19 infection survey
• Specialised commissioning and Integrated Care Boards
• Continued protection of immunocompromised patients - letter to the PM
• PID as a serious cause of disbility statement
• APPG on Vulnerable Groups to Pandemics report - COVID-19 inquiry update; March 2023
• NICE decision on Evusheld - press release Evusheld for the UK
• APPG response to NICE decision on Evusheld
• Letter for patient groups from Will Quince MP, Minister of State
• Evusheld campaign
• Immunodeficiency UK's full submission to NICE concerning Evusheld
• Private access to Evusheld
• Evusheld,is it effective?
• Response to the NICE COVID-19 medicines multi-technology consultation
• Letter to SoS for Health and Social Care Theresa Coffey
• Evusheld - letter of response from Steven Barclay
• Evusheld open charity letter to Secretary for State for Health and Social Care
• Evusheld letter to SoS Steven Barclay MP
• Evusheld letter to the Chancellor
• Template letter for MPs - timeline for procurement of Evusheld
• Access to prophylactic Mabs against Covid
• Keep lateral flow tests free for the immunodeficiency community
• Questions in the House of Lords
• Third Covid jabs available to book online for people who are severely immunosuppressed
• Access to anti-Covid monoclonal antibody therapy Ronapreve
• Patient survey on use of remote consultations
• Health Foundation Briefing on impact of COVID-19 on the clinically extremely vulnerable
• Covid - Don't forget us! My plea to Government for an action plan
• Access to passive immunity therapies for the immunodeficiency community- response from MHRA
• COVID-19 - strategy for the immunocompromised - response from DHSC
• Call for workplace support for people not fully protected by Covid-19 vaccines
• PID UK's patient survey on immunoglobulin provision
• PID UK's Medical Professional Survey - provision of IG
• Provision of IG replacement therapy
• PID UK patient survey
• Support for IPOPI position statements
• SCID UK Newborn Screening Programme
• Why we need SCID newborn screening
  • George's life story
  • James's life story
  • Aimee's life story
  • Owen's story
  • SCID and my family
• Affiliations and links

Fundraising

• Immunodeficiency UK Supporter Pack
• Get sporty
• Setting up a donation page
• Supporting your fundraising
• Your Fundraising Stories
  • Matt and Leah's story
  • Ewan’s fundraising story
  • David’s story
  • Jodie’s story
  • Chad's story
  • Jonathan's story
  • Dr Elkhalifa’s 10k run
  • Simon's marathon
  • Daryl's story
  • The 4 Non Blondes
  • Drew's story
  • Sandeep's story
  • Paddy’s story
  • Ravin’s story
  • Catherinel and Lucy's story
  • Paul's story
  • Zena's story
  • Carolyn's story
  • Jo Herbert's story
  • Baxalta Cycling Challenge
• Easy ways to fundraise
• Celebrate and Give
• In memoriam gifts
• Leave a gift in your will

Webshop

• T-shirt
• Running vest

Make a donation

• Donate by post
• Gift Aid

Newsroom

• Immunodeficiency UK e-bulletins
  • Bulletins 2023
  • News bulletins 2022
  • News bulletins 2021
  • PID UK newsletter survey 2020
  • bulletins2020

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