LETTER from IPPOSI to the Chief Clinical Officer at the HSE (Dr Colm Henry). The Irish Minister of Health, (Stephen Donnelly), the HSE Board. This will also be raised at the next National Patients’ Forum meeting of which IPPOSI are members and co-chair. 

2022 Vaccine Joint Action

 18 February 2022 

CALL TO ACTION: Patient and service user organisations urge health service to ensure maximum protections are available to medically vulnerable as we live with COVID 

Dear Dr Henry, Dr Cormican, 

We thank you for reaching out to our communities during the last HSE COVID Community Network Meeting on 19 January. This approach has been well received, and we hope that this can be a model for future interactions with the health service as we continue to live with COVID in particular, and as we work towards building a better health service more generally. 

Since the meeting, we (as patient and service user organisations) have met to discuss the needs and concerns of our communities in relation to COVID-19. We write to you to invite the HSE to: 

➢ Allocate highest priority to high risk and very high risk individuals in the guidance around the allocation of new antiviral and antibody treatments against COVID-19 

Systematically involve individuals with lived experience of managing a chronic and/or rare condition(s) in key decision-making processes 

Provide a tailored plan and engage in direct communication with medically vulnerable individuals, especially those with a chronic and/or rare condition(s), to address existing service and treatment challenges while we live with COVID-19 and as we ease or lift public health restrictions 

We hope that these actions – if implemented – will ease some of the burden for medically vulnerable individuals, including those who continue to manage a chronic and/or rare health condition(s) during this pandemic. 

We are aware that some information about the allocation of new antiviral and antibody treatments is now available on the HSE website. We would welcome the opportunity to comment on the prioritisation and clinical guidance in full as our members have several questions and concerns about the information provide to dated: 

It indicates ‘people at highest risk from COVID-19’ and ‘Risk groups who will also be prioritised’, but it is not clear how these people at highest risk and risk groups are being prioritised within this category when resources are limited. 

It invites people at highest risk to contact their GP or their consultant, but this places the burden on the patient rather than puts in place a system of identifying people at highest risk during the PCR testing process. 

It places the burden of responsibility on the individual consultant for determining whether a COVID-19 medicine is suitable or not for a patient, which may result in different patients receiving different advice based on their attending hospital. 

It currently refers to Sotrovimab, a treatment which is administered in hospital, but it is not clear how take-at-home treatments will be made available such as Molnupiravir and Paxlovid, and whether this process will be centralised or consultant-based. 


➢ Allocate highest priority to high risk and very high risk individuals in the clinical guidance around the allocation of new antiviral and antibody treatments against COVD-19 

Medically vulnerable individuals, especially those with chronic and/or rare conditions, are among those at highest risk of severe illness or death in the event of contracting COVID-19. Many of these individuals have lived in complete isolation since March 2020. As large sections of society return to ‘normal’, for this vulnerable community life remains largely the same as under lockdown. Parents are living apart from children, employees are giving up careers, mental and physical health is suffering. 

We cannot leave these individuals behind. We must make every possible treatment available to them so that they can be confident that their health is as protected as it can be when resuming some small level of social activity, including attending non-COVID care appointments. We note that this community has been diligent in doing everything that they can do to protect their health, including coming forward for vaccination as requested. We must show similar resolve to protect their health by prioritising their access to all and any suitable treatments. 

We therefore ask that you give the medically vulnerable individuals within the high risk and very high-risk categories first-tier priority in the allocation of new antiviral and antibody treatments in the event of receiving a positive PCR and/or antigen test (in either an outpatient or an inpatient setting). 

The US COVID-19 Treatment Guidelines Panel’s Interim Statement on Patient Prioritization for Outpatient Anti-SARS-CoV-2 Therapies or Preventive Strategies When There Are Logistical or Supply Constraints provides a clear tiered prioritisation of patients for treatment. 

Systematically involve individuals with lived experience of managing a chronic and/or rare condition(s) in key decision-making processes 

In arriving at a tiered prioritisation of patients for treatment, we understand that certain patient communities will need to be ranked against others to ensure the efficient management of (initially) limited resources. We urge you to partner with medically vulnerable patient leaders and clinicians to arrive at this prioritisation, and to carefully review all the available scientific evidence around risk in arriving at this decision. A simple eligibility criteria based on treatment status or isolated blood work is unlikely to paint a full picture of the risk present to a medically vulnerable individual who may have a range of different co-morbidities. 

From information shared at the HSE Covid Community Network Meeting, we understand that a National Therapeutic Advisory Group (TAG) has been established to develop guidance to support clinicians in allocating new therapies for the treatment of COVID-19. The full membership of this TAG (and of the Therapeutics Operational Group) should be made publicly available. We ask that two patient representatives be immediately invited to join the TAG to ensure that the lived experience of individuals with chronic and/or rare conditions informs the direction of travel. We suggest that clinicians with specific expertise in the treatments of individuals with different chronic and/or rare conditions (in addition to those clinicians who 3 

might be infectious disease specialists) also be invited to contribute their evidence to the Advisory Group. 

We urge the National Therapeutic Advisory Group to also link up with the National Patients and Service Users Forum to allow for the incorporation of additional consultation and feedback from the patient community. For instance, draft clinical guidance on the allocation of new antiviral and antibody treatments could be circulated for review before formal publication. 

The Australian National COVID-19 Clinical Evidence Taskforce includes among its members several patient organisation leaders. It is also guided in its work by a Consumer Panel. 

Provide a tailored plan and engage in direct communication with medically vulnerable individuals, especially those with a chronic and/or rare condition(s), to address existing service and treatment challenges while we live with COVID and as we ease or lift public health restrictions 

As society opens up, as a group, individuals managing a chronic and/or rare condition(s) are less and less sure of what is safe, and of what measures are in place to protect them. And so while the public may no longer want public health advice, the same cannot be said of the medically vulnerable community. We need to bridge this information gap and we need to build confidence. We can only do this by communicating in a way that is tailored to address the interests and concerns of the audience (the medically vulnerable community, their families and carers). The claim that this can be done through individual consultants is not prudent, adequate or efficient. 

From our informal interactions with our members, we know that there have been many concerns around PCR and antigen test supply. While this issue appears relatively insignificant in the troughs between waves, it becomes of critical importance during the peaks. Many of the new antiviral and antibody treatments rely on early disease identification, therefore the continuity of and availability of rapid testing (and results!) is essential. We ask that a plan for living with COVID consider the allocation of testing slots for the medically vulnerable and the use of PCR home-tests (like in the UK). 

Looking at other issues of interest to our members, we continue to field questions about access to outpatient COVID-treatment options, potential drug interactions with COVID-treatments, future vaccination (booster) schedules, and hospital visitation policies. As the representatives of medically vulnerable communities, we ask that you work with patient and service user organisation leaders to establish an appropriate channel of communication between these individuals and the health service to respond in a meaningful way to these issues of concern. For instance, there needs to be clear clinical pathways which are understood by patients and by their healthcare professionals – during the recent fourth round of vaccinations, many patients initially approached their GPs only to be referred elsewhere. 

We also ask that you continue to review and respond to the health status of this community, which can only be meaningfully done by commissioning research into the impact of COVID on the health outcomes of this community and by allocating resources accordingly to address any issues identified. 4 

The UK Guidance for people whose immune system means that they are at higher risk details eligibility for vaccine doses and new treatments for COVID-19. 

We currently live in a two-tiered society. Healthy individuals go about their daily lives, and individuals managing chronic and/or rare conditions reduce their family, professional, and social circles to protect themselves. We need a sustainable plan to address this inequality – a plan which is developed with the medically vulnerable community, and which includes their prioritisation in the allocation of existing and future available treatments. 

We remain open to discuss any of the issues highlighted in this letter, and to support the health service in doing the best that it can do for the medically vulnerable during this difficult time. We thank you for all your efforts to date. 

Kind regards, 

Derick Mitchell, CEO, IPPOSI 

Geraldine Kelly, CEO, Alpha-1 Foundation Ireland 

Rachel Morrogh, Director of Advocacy, Irish Cancer Society 

Jan Rynne, Chair, CLL Ireland 

Joan Johnston, General Manager, COPD Support Ireland 

John Dolan, CEO, The Disability Federation of Ireland 

Chris Macey, Director of Advocacy and Patient Support, Irish Heart Foundation 

Carol Moore, CEO, Irish Kidney Association 

Patrick Cassidy, Chairperson, Muscular Dystrophy Ireland 

Vicky Mc Grath, CEO, Rare Disease Ireland 

cc: Minister for Health, Secretary General for Health, HSE Board Chair, HSE Chief Executive, HSE Communications Directorate, HSE National Therapeutics Advisory Group Chair, HSE National Patients’ Forum Chair 


Establishment of NI All Party Rare Disease Working Group

We’re delighted to announce on #RareDiseaseDay and also NIRDP’s 10th anniversary that an All-Party Group (APG) for Rare Disease has been established at the NI Assembly. This is all down to you, the NI Rare Disease Community who gave your support to the NIRDP ‘Fair for Rare Campaign’ which resulted in hundreds of letters being sent to all the NI MLA’s urging them to help us set up this important APG.
We would like to introduce the All Party Group Officers:
Chairperson: Mark H Durkan MLA
Vice Chairperson: Maolíosa McHugh MLA
Secretary: Paula Bradshaw MLA
Treasurer: Deborah Erskine MLA
Thanks to the APG Officers and to all the MLAs who have offered their support to this cross party voice at the NI Assembly. We look forward to updating you on the work of the APG in the coming months.

IPPOSI Citizens’ Jury 2022 – looking at Genomics

Closing date 23rd March 2022


2022 Citizens’ Jury Now Open for Applications!
Dear Members,
Today (February 28th, 2022) IPPOSI has launched a campaign to identify and recruit 25 members of the public, broadly representative of the Irish population, willing to step up as members of a Citizens’ Jury to deliberate on the ‘tricky’ topic of Genomics.
Thanks to important breakthroughs in science and technology, we are learning more and more about our human genome (the complete set of DNA that makes up our body). At an individual level, access to this genomic information can be used to understand diseases and improve our personal health. At a societal level, collecting this genomic information can guide improvements in public health. But this information belongs to people, and those people should have a say in how genomic information should be used in Ireland for health care and health research.
In June 2022, the 25 members of the jury will meet for several hours, across a series of online and in-person sessions, chaired by an independent facilitator. In these sessions, jurors will have the opportunity to hear testimony and cross-examine witnesses who are experts in the field of genomics, medical care, ethics, and law.

The jury will examine how genomic information can improve our health as individuals and as a society. It will also probe to what extent we should support the increased use of genomics in our health care and health research, the challenges and opportunities that arise from doing so, and the safeguards that need to be put in place to maximise progress while containing the risks.
Jury Details:
  • Applications open: Monday 28th February 2022
  • Applications close: 9pm on Wednesday March 23rd 2022
  • Applicants must be 18 years of age and living in the Republic of Ireland
  • Jurors will receive €400 for their participation in the entire process
  • Jury will take place over several weeks in June 2022 using a hybrid event approach
  • The jury is overseen by an independent Citizens’ Jury Oversight Panel which comprises genomics, legal, ethics experts, as well as public and patient organisation representatives.  
  • See full details here
Welcoming the initiative as an opportunity to seek the views of the public on an area that urgently needs robust oversight, IPPOSI board member, Prof. Orla Hardiman, comments:

“Genomics. Not exactly a word that trips off the tongue or that we’re hugely familiar with. However, we wouldn’t exist without it. The human genome is the blueprint for our bodies. Made up of DNA, no human genome is the same, and tiny glitches in that DNA can give rise to serious illness and disability. Developing genomic medicine that is specific to a person’s DNA, can have a transformative effect on their lives and future health and well-being, as well as for wider society. However, we do need to take steps to maximise the societal benefits, and to also minimise the risks that come with genomic research in Ireland and to ensure that the appropriate structures and guidelines are in place so that everything we do benefits us collectively as a society.

“As a doctor and a scientist, I have seen the benefits of genomic research. But at the moment, as a society, we need to understand what the best approaches are that will allow us to conduct meaningful research that benefits everybody. It’s important that we hear from the Irish people about what they are comfortable with when it comes to giving consent for genetic research, and the types of information that is needed to understand how their genetic data will be used. You don’t have to have a science or medical background or know anything about genomics to join the jury. We want you to come with an open mind and lots of questions.”

For Derick Mitchell, CEO of IPPOSI, genomic research is a double-edged sword and it is important that Government and policy-makers listen to the views of the public:

“There are many challenges around genomics. Notwithstanding these, many of IPPOSI’s members living with chronic and rare diseases believe that if we get it right, it offers the potential for scientific and medical breakthroughs that will enable patients to receive a quicker diagnosis and a treatment plan that is personalised to them. However, it is also the case that genomics can potentially be used for other less altruistic purposes. Conceivably, employers, banks, insurance companies, and businesses could use this information to discriminate against one person over another in the provision of services. With this Citizens’ Jury, we want to explore public opinion around the opportunities presented by genomics, as well as the challenges that may arise from a social, ethical, legal, and practice point of view. What rules do we need to have in place around how genetic information is stored, who can access it, whether the information can be deleted on request, and safeguards to protect it from getting into the wrong hands?”

If you have any questions please contact jmoran@ipposi.ie


International Vasculitis Patient Hybrid event-4


EURORDIS October ’21 newsletter


EURORDIS Member News

News for EURORDIS Members,
direct to your inbox twice a month

6 October 2021
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Dear Member,


Effective engagement of people living with a rare disease can be achieved when patient representatives are actively involved in the quality, safety and efficacy assessment and approval of existing therapies and treatments. Join today the Committee for Advanced Therapies of the European Medicines Agency or the EMA Pharmacovigilance Risk Assessment Committee to be the voice of our community and push for better practices in the medicines’ development and use. Get in touch with Maria Cavaller to learn more.

Highlights of the week: Sign up now for our webinar on the Rare2030 survey findings! Don’t miss out on the opportunity to explore the key findings and how they can be used in your own advocacy!


Last call to register for the Rare Barometer project on diagnosis! Share your experience in obtaining a diagnosis as a rare disease patient or carer by participating in an innovative online discussion.

Anja Helm

Anja Helm
Senior Manager of Relations with Patient Organisations

Add me to your contact list

Get involved
people at summer school by pool


Become an expert in medicine research and development!

Applications for the EURORDIS Summer School are now open! Taking place on 6-10 June in Barcelona, it is a unique opportunity for patient advocates to learn about clinical trials, research and regulatory affairs from over 20 experts, and become experts themselves!


Apply now
  join the call


New Resolution4Rare Materials to download!

The world leaders meeting at the 76th UN General Assembly will decide whether to adopt a UN Resolution on Persons Living with Rare Diseases (PLWRD) and their Families. We must raise our voices and be visible at this critical moment. Call for a Resolution that urges the UN to act 2021!


Download tools now
Tools for you

Building a better future for people with rare diseases together

Read Yann Le Cam’s most recent article ‘The way to gain 100 million years of life for persons living with rare disease’ and help us advocate for a uniform and proactive strategy across Europe to optimise the way that rare diseases are diagnosed, treated, cared for and researched.

#30millionreasons campaign update: full recording and presentation slides now available

Missed our last webinar on the #30millionreasons campaign update? Don’t worry, you can now access the full webinar recording and the presentation slides online! The webinar gave an overview of the state of the art of the #30millionreasons campaign and what needs to be done to have Europe’s Action Plan on Rare Diseases adopted.

Events, trainings and webinars

How to reduce inequities in access to neonatal screening?

Join this meeting sponsored by the Slovenian Presidency of the EU Council to learn the latest developments on newborn screening programmes across Europe.

Register now


Webinar on the Rare2030 survey findings

Register now for the webinar on the Rare2030 survey findings! Presented by EURORDIS team members, explore the key findings and learn how the survey results can support you in the #30millionreasons campaign to help advocate for a European action plan on rare diseases!

Register now

  • Join us and make a difference as our Patient Engagement Junior Manager!

We’re hiring! The Patient Engagement Junior Manager – Healthcare, ePAGs, ERNs plays a key role, supporting EURORDIS activities to enable sustainable patient engagement in the ERNs’ activities and decision-making process. Learn more

  • On the lookout for a project: valuing the burden of rare diseases

We are looking for current or past Europe-wide projects, conducted in English, aimed at putting a value on the burden of rare diseases, mostly cost-of-illness and health-related quality of life studies. Projects where instruments and methodology used to value medical, non-medical, indirect and intangible costs are described in the scope are especially welcomed.

Contact Julien Delaye for more information

Connect with EURORDIS
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This publication received funding under an operating grant from the European Union’s Health Programme (2014-2020), and from the AFM-Téléthon and corporate donors. This material only reflects the views of the author, and funders cannot be held responsible for any use which may be made of the information contained herein.

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European Medicines Agency – October 2021 Communication




Rare Diseases Ireland – October, 2021 Update

Survey: What’s your Rare Reality?

PLEASE, tell us your experience of healthcare while living with a rare condition in Ireland. We want to understand the challenges people living with rare conditions face accessing diagnosis, treatment & care.  With your help we can advocate for improved health services for everyone living with rare conditions in Ireland.



Update: the #Resolution4Rare campaign….

Over the coming weeks a UN Resolution for people living with rare conditions will be brought forward to the UN General Assembly for adoption. This Resolution aims to highlight the challenges that people living with rare conditions around the globe face in their daily lives and how the UN can help to promote equity and inclusion for the rare community.

Please join the #Resoultion4Rare campaign – show your support on social media OR write a letter to the UN OR join our campaign. More details at rdi.ie/resolution4rare/.


Join our AGM, Tues Oct 19, 12 noon….

RDI’s Annual General Meeting is scheduled to be held on Tuesday Oct 19th at 12 noon via Zoom. If you would like to join us for this year’s AGM please register in advance to attend.

Full details of the AGM, associated Information Pack and links for registration are available at https://rdi.ie/agm2021/

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October, 2021 Royal Society of Medicine – Nephrology update





IPPOSI AGM and Conference

By patient representative Julie Power

This is the link to the IPPOSI conference, detailing speakers, agenda and photos from the day.


The take home messages for me was that

Electronic healthcare records (EHR) include more than just patient notes.

There is lots of technology involved in healthcare i.e. ICT is involved in delivery of all healthcare and this needs to be acknowledged at policy level.

There needs to be a cultural change to implement EHR

Patient involvement in the design and implementation of Electronic healthcare is recognized and necessary – co-creation from the beginning, creation of Citizen’s Juries to assist with this.

Information is stored in silos at the moment, there needs to be more sharing and learning from each other.

We need to learn from each other as the various stakeholders and also learn from other countries.

Multi- morbidity (co existing health conditions) increases the level of challenge.

Learn from present data, evaluate, learn, implement learned issues and re-evaluate on an ongoing basis- build in these learning cycles in ICT development.

Optimize with available resources.

Create EHR with reusable data to improve care.

Primary, Secondary and Tertiary care needs to be joined up.

Needs to incorporate all ages to help with difficulties in transition from children to adult services.

Experts live with the condition; specialists work with it.

Information needs to be supported with smart tools.

If you click on the link above, you will also get access to a terminology booklet, created by IPPOSI, which will explain the terms commonly agreed to use when talking about Electronic Health Care.

There is also a live recording available on this link.

One of the most inspirational speakers for me was Declan Noone, who spoke of how EHC helped in the care of Haemophilia, how they developed it and how it works.

Below is the picture of the 2019/2020 IPPOSI Board members, with me third from right as a patient representative.


Royal society of Medicine news


Nephrology Section monthly enews

We’ve compiled all kinds of content relevant to nephrology and renal professionals such as e-resources available to RSM members, upcoming events, prizes, recent articles, and the RSM YouTube channel where you can watch the popular COVID-19 series, the In Conversation Live series, and the Health Emergency of Climate Change series for free. Please scroll down to see what we have for you […]

Rare Diseases Ireland Update


Survey: What’s your Rare Reality? 
PLEASE, tell us your experience of healthcare while living with a rare condition in Ireland. We want to understand the challenges people living with rare conditions face accessing diagnosis, treatment & care.  With your help we can advocate for improved health services for everyone living with rare conditions in Ireland.


Update: […]

NI Vasculitis Care Survey 2019


This is for people living in NI only
This survey was developed to complement the project ECHO scheme for Vasculitis in Northern Ireland and gives individuals living with Vasculitis a chance to express their opinion on the treatment they receive and the effect it has on living every day with this condition.  It has been designed by patients, for patients, […]


A Charter for Patient Involvement

–  Medicines, Assessment and Reimbursement in Ireland

We are proud to be one of 35 signatories in this important document, which calls on the Irish government to improve transparency, accountability and communication on how medicines are assessed and reimbursed by the state, was co-ordinated by Irish Platform for Patient Organisations Science and Industry (IPPOSI), the Medical Research Charities Group (MRCG, and Rare Disease Ireland (RDI). It sets out 29 actions that the relevent state agencies (Department of Health, Health Service Executive, National Centre for Pharmacoeconomics) should take to inform and include patient perspectives at every stage of the process.