The themes of Rare Disease Day 2021 – rare is many, rare is strong, rare is proud.

This is our story representing these themes.

Pseudo Obstruction (CIPO) is a rare and potentially debilitating bowel motility disease where the complications can be life threatening. PORT (Pseudo Obstruction Research Trust) is a small charity that was founded in 2006. It was founded in the memory of a beautiful little girl named Emily; whose life was cruelly taken by complications relating to this disease. Amidst this awful loss two friends, Emily’s mum Sonia and friend Sue founded PORT. They wanted to create a legacy for Emily, to fund research to improve the lives of others with the condition, and to support people with the disease so sufferers and their families wouldn’t have to go through the journey alone. Their initial determination to do something positive lives on in PORT today. PORT has a flourishing Facebook group. Although the disease is rare, many come together as a community, supporting one another and offering invaluable advice from lived experience. The closed Facebook support group really is an example of rare is many at its finest. People come together, of all different ages, parents with babies suffering from the condition, to adult children whose parents suffer with the disease, as well as many seeking personal advice too. From a small group that started in Essex, PORT now offers support to those all over the UK, and internationally too. It’s a forum to support each other through the difficult times, but also to celebrate the good.

PORT has also demonstrated time and time again rare is strong. The initial aim to fund research into this rare disease, still remains at the heart of the charity. Sonia and Sue showed incredible strength when they established PORT, and that continues today. Despite our families going through huge amounts, on a daily basis, the fundraising efforts have been and continue to be phenomenal. Right now, one of our trustees who has a son, Charlie, with the disease, has been intensively training for the London Marathon 2021. He had barely run before, but his determination to accomplish this challenge is nothing short of inspiring. His drive to complete the task has been matched by his fundraising efforts and the support of his wider friends and family, who know Charlie and what he and the family have to endure with the disease day in day out.

Rare is strong is lived out on a daily basis by all the adults and children with this disease. Getting up in the morning, and going about one’s day, whilst having to contend with severe pain, sickness and the countless medical procedures and appliances such as intravenous feeding, stoma bags and tubes, all demonstrate rare is strong. Not many people have to train to be nurses to receive their nutrition, or administer nutrition to their loved ones, or to be vigilant for the signs of sepsis due to having a central line into their bloodstream, but this is daily life for many sufferers of CIPO. And at the helm of PORT is the Chair Sue Stewart, who works tirelessly, with compassion and strength, to keep PORT going – rare is strong!

PORT might be a small charity run solely by volunteers, but the impact it has made and continues to make is undeniable. Over £750,000 has gone towards research. This is research that would not have gone ahead if PORT did not exist. This is just a glimpse into all the work that goes on behind the scenes for the research to happen. All the links and relationships that have been forged and all the research that has been scrutinised before being funded. For this we at PORT are extremely proud. We are proud of all that PORT has achieved, all the people that have been given hope, advice and information right through their journeys, from before their diagnosis right through to living with the disease. We are extremely proud of the amazing legacy that has been created in Emily’s memory, and all those that have gained strength through PORT.

PORT really epitomise rare is many, rare is strong and rare is proud and the following testimonials from members substantiate this too.

‘This charity has been an invaluable support platform, providing not only incredible contributions to research and treatments, but also providing sufferers and families with a voice.’

‘One of the biggest things for me is PORT has given me hope that one day a cure will be found, it gives me comfort that I’m not alone in this battle and it’s given me support and friendship when I’m feeling alone and isolated.’

‘PORT’s efforts provide hope that people living with these conditions might have a better future.’

‘Sharing stories, advice and well wishes with others is invaluable when you have a family member with a rare and debilitating illness.’

Pseudo Obstruction Research Trust (PORT) reg 1114217

Safeguarding Policy – August 2018

This policy applies to all staff, trustee’s, and volunteer workers, or anyone working on behalf of Pseudo Obstruction research Trust (referred to as PORT within this document).

The purpose of this policy is to,

Protect children, young people, and their parents, who receive any services from PORT.

Protect adults and vulnerable adults who receive any services from PORT.

To provide staff and volunteers with overarching principles that guide our approach to safeguarding.

PORT believes that a child young person adult or vulnerable adult should never experience abuse of any kind. We have a responsibility to promote the welfare of all and to keep them safe. We are committed to practise in a way that protects them.

Legal Framework

This policy has been drawn up on the basis of law and guidance that seeks to protect children and adults namely:

Data Protection act 1998

Human Rights Act 1998

Sexual Offences Act 2003

Safeguarding Vulnerable Groups Act 2006

Protection of Freedoms Act 2012

Children and Families Act 2014

Special Educational Needs and Disability (SEND) code of practice, 0 to 25 years, statutory guidance for organisations which work with and support children, and young people who have special educational needs or disabilities HM Government 2014.

Information sharing Advice for practitioners providing safeguarding services to children young people, parents, adults and carers. HM Government 2015.

Working together to safeguarding children a guide to inter agency working to safeguard and promote the welfare of children HM Government 2015.

We recognise that

The welfare of the child is paramount as enshrined in the Childrens Act 1989.

All children regardless of age, disability, gender assignment, race, religion, or belief, sex or sexual orientation.

Some children are additionally vulnerable because of the impact of previous experiences, their level of dependency, communications needs or other issues.

Working in partnership with children young people, their parents, carers and other agencies is essential in promoting young peoples welfare.

We will seek to keep children and young people safe by;

Valuing them listening to them with respect.

Appointing a designated Safeguarding officer and a deputy.

Adopting child protection and safeguarding policies through procedures and a code of conduct for staff and volunteers.

Providing effective management for staff and volunteers through supervision support and training.

Recruiting and storing information professionally and securely. Sharing information about safeguarding and good practice with children and families staff and volunteers via e mail, and/or one to one discussions.

Using our safeguarding procedures to share concerns and relevant information with agencies who need to know, and involving children, young people, parents, families, and carers appropriately.

Using procedures to manage any allegations against staff and volunteers appropriately.

Creating and maintaining an Anti-Bullying environment and ensuring that we have a policy and procedure to help us deal effectively with any bullying that does arise.

Ensuring we have effective complaints and whistleblowing measures in place.

Contact details

Designated Safeguarding officer (DSO)

Sue Stewart 07939 885699 /

Deputy DSO

Rebecca Stanier 07903 664386 /


PORT Charity raised £60,073 in our last financial year (31st March 2017).

PORT funded £126,855 towards three projects.  This is an amazing achievement for such a small charity.

PORT funded a manometry device for use in colonic manometry on behalf of the gastro paediatric department at The Royal London Hospital. (Stewart Cleeve)

PORT has funded the EVASION research project looking at the effect of transcutaneous and physiological vagal nerve stimulation on symptoms and motility in patients with CIPO/Dysmotility. This project is on behalf of Prof Adam Farmer,  University College Hospital, North Midlands and Prof Qasim Aziz Barts and The Royal London Hospital.

The identification of CIPO subgroups with underlying connective tissue disorders and the assessment of GI Anatomy, motility and response to pharmacology in CIPO subjects using novel MRI techniques, Dr. Asma Fikree / Prof Qasim Aziz.

A great year for #TeamPORT.  Thanks everyone for all the support and fundraising efforts. Heres to another great year on our mission to help all that suffer!!