EURORDIS October ’21 newsletter


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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

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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

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

Copyright © 2021 Rare Diseases Ireland, All rights reserved.
You are receiving this email because you opted in via our website.

Our mailing address is:

Rare Diseases Ireland

Carmichael House
North Brunswick St

Dublin 7, Dublin


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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.