EURORDIS Rare Disease & Rare Cancers Survey


EURORDIS, through its Rare Barometer programme, has launched a new survey on rare diseases/ rare cancers patients’ experience of treatment. The purpose is to highlight unmet treatment needs.

The results of the survey can be very useful for the advocacy work that EURORDIS do in the field of rare cancers and would complement other survey’s results you may have completed for the organisation before.

EURORDIS have a team of professional researchers, specialised in surveys, who shall be able to conduct a thorough analysis of the responses received.

The survey is available in 23 languages and is intended for patients, their family members and carers. All responses are anonymous and will be kept in secure storage only accessible to their research team.

The survey shall take about 10 minutes to complete:

EURORDIS would like to reach out to all who are affected and ask them to please answer this survey and disseminate it widely to anyone else that you know who may also be affected.

The more results that the EURORDIS team are able to gather the more they shall be able to sort results by:

–       Age group (paediatric cancers vs rare cancers in adult)

–       Countries (or maybe just Western Europe vs Eastern Europe)

–       Type of cancers (or maybe just haematological malignancies vs rare solid tumours)

Please also note that the research team shall be able to come up with tailored infographics, based on our request and needs.

The survey is open until 30 April.


Making our voices heard

We know that if something isn’t counted, it doesn’t count… And we all want to use our experiences and our knowledge to make positive change happen in our health and social care system.  So we are working to make sure that the voices of rare disease patients and families – and the voices of their carers, whether that is family, friends, clinicians, social care professionals – are gathered, and reported so that those voices count.

We are running our own short survey at the moment – and the response has been great! Spread the word and get more responses in so we can have a report ready to publish in the autumn.


In addition, we are working with the Public Health Agency’s 10,000 Voices Programme to make sure that their surveys can capture and report the experiences of rare disease patients and families.

There are two surveys currently running:

  • Out of hours GP and emergency care; and
  • the experience of contact with the health and social care system.

Both can be accessed through the 10,000 Voices website:

It would be good if as many people as possible can complete these surveys: the 10,000 Voices Team have facilitators who can help; and are keen to work with us to ensure that the experiences of rare disease patients and families are heard.

Palliative Care: The Lets Talk About Survey

The All Ireland Institute of Hospice and Palliative Care’s “Let’s Talk About” care survey is gathering experiences, good and bad, about palliative care in the Republic of Ireland and Northern Ireland.

Many people with rare diseases live with a serious or progressive medical condition from which they are unlikely to be cured and which may limit or shorten their life.

Taking a palliative care approach helps to give people the best possible quality of life. You can help improve policy and services by sharing your real life experiences in this survey. Palliative care is an essential element in supporting all those living with serious and progressive conditions to live life to the fullest possible extent.
If you have had an experience of palliative care, good or bad, please take the time to complete the AIIHPC’s survey, anonymously, so that your experience can help build better provision for the future. Further information, and the survey, is available on line at; or contact Cathleen Mulholland at or phone 00 353 (0) 1 491 2948


Good News!  Our original end March deadline for responses to the “Living Every Day with Rare Disease” Survey has been extended: so we now have some more time to get our voice heard.

If you haven’t done so already, go to the Survey (see the Living Every Day with Rare Disease tab, on the bar above) and complete the survey; or e mail and we will send out paper copies, or arrange for someone to phone you to complete it .

And please pass the word around; get Support Group Members, carers, professionals to complete the Survey too. We need as many responses as we can, to demonstrate that Rare Diseases matter to a lot of people, and to show the impact that they have on people’s lives…

“Stronger Together” in action

In Northern Ireland it is estimated that more than 100,000 people will be affected by a rare disease- that’s approx. the size of a city like Derry~ Londonderry. Each condition lacks a critical mass, but collectively, rare diseases are not uncommon.

Andrew and Caroline from Vasculitis ireland
Andrew and Caroline from Vasculitis Ireland


On Monday, 13 January, over 100 service users, carers, health care professionals, policy makers and representatives from the community and voluntary sector came together to encourage people living with a rare disease in Northern Ireland to take part in a regional involvement exercise.

people living with rare disease, clinicians, policy makers and politicians gathered together
people living with rare disease, clinicians, policy makers and politicians gathered together


The ‘Living Every Day with a Rare Disease’ event, hosted by the Northern Ireland Rare Disease Partnership in collaboration with the Public Health Agency (PHA) and the Health and Social Care Board (HSCB) took place at Parliament Buildings and was sponsored by Simon Hamilton MLA.

Marie and Cathy from SHINE
Marie and Cathy from SHINE


The event formally launched the ‘Living Every Day with a Rare Disease’ survey which will inform the development of the ‘Northern Ireland Rare Disease Implementation Plan’. This survey is the first of its kind in Northern Ireland, responses will help shape the way that future services are managed and delivered.


Errol & Marilyn from HDANI, with Gavin McDonnell
Errol & Marilyn from HDANI, with Gavin McDonnell

Our Chair, Christine Collins said, “1 in 17 people in Northern Ireland are affected by a rare disease at some point in their lives. They may be the only person they’ve ever heard of with that condition. They may have to travel hundreds of miles, and across the sea, to see a specialist. Specialist support in the community can be limited. Individual conditions are rare, but collectively, rare diseases are not.   A common feeling is one of isolation. This survey will give people a voice to explain their everyday needs, challenges and the obstacles they face.”

Rosemary from Multiple Systems Atrophy Trust
Rosemary from Multiple Systems Atrophy Trust


Launching the survey Michelle Tennyson, Assistant Director for Allied Health Professions (AHP) and Personal and Public Involvement with the PHA, said: “We are committed to supporting people to tell us what it is like to live with a rare disease, listening to what they tell us and learning how best to provide services to meet their needs.”

Fiona, Darryl, Jenna, Dearbhail, Regina
Fiona, Darryl, Jenna, Dearbhail, Regina


Dean Sullivan, Director of Commissioning at the Health and Social Care Board added: “The findings of this survey will be used to inform the commissioning of health and social care services for patients and clients with rare conditions.”

Christine Collins, Michael Holden & Alison Wilson
Christine Collins, Michael Holden & Alison Wilson


Sharing his experiences with policy makers, Michael Holden said the survey was an opportunity to make sure his experience helped make a difference. “Being diagnosed with a rare disease, in my case Motor Neurone Disease, is life changing.  There are many areas we need to improve in terms of supporting patients. It can be difficult for patient support groups and charities to impact services, so I would ask everyone affected by a rare disease, personally or through a family member, to complete the survey and have their voice heard.”

Complete the survey here:


Register for the rare disease day event on 28 Feb here:


Living with chronic pain?


Do you suffer from Long-Term (Chronic) Pain?

The Patient and Client Council is an independent voice for people in Health and Social Care.  They want to find out about people’s experience of the treatment and care they have received for long-term pain, to ensure that those voices are heard by decision makers in health and social care with a view to developing a pain strategy for Northern Ireland. The PCC will use what people tell them  to produce a report for decision makers that is based on experience. The report will make recommendations for changes and improvements based on what you say.

If you suffer from Long Term (Chronic) Pain and would like to participate, please complete the questionnaire at

If you need any further information, please contact:
Sorcha Forbes Project Officer
Patient and Client Council
Tyrone & Fermanagh Hospital
Co Tyrone
BT79 0NS
0800 917 0222
028 82252555