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Rare Disease Focus: Supporting RARe Disease Throughout All Communities #RareDiseaseNI

Rare Disease Community

JOIN OUR RARE DISEASE COMMUNITY

One community - many ways to get involved!

Welcome to our RARDTAC Rare Disease Research Community - a collaborative space bringing together individuals, families, clinicians, researchers, and partners across and beyond Northern Ireland who share a commitment to improving the lives of people living with rare conditions.

Rare diseases may be individually uncommon, but together they impact thousands of people across our region. RARDTAC exists to strengthen connections, amplify voices, and support research that leads to better understanding, better services, and better outcomes for our community.

Through this page, you can join one or more of our networks depending on your interests and how you would like to get involved.

 

Join Us:

RARDTAC

Open to anyone with an interest in rare diseases - individuals, families, community groups, and professionals with / without lived experience.

Joining this network allows you to receive updates about upcoming events and workshops, rare‑disease news, initiatives, and various opportunities to contribute to research projects. 

This is our broadest community space, designed to support connection and shared understanding across the rare disease community.

RARDTAC : Link - https://forms.office.com/Pages/ResponsePage.aspx?id=6ner6qW040mh6NbdI6HyhtYgSNgU1wNLq3lBnvdJnkxUQ0pHN0syS0sxTUZHNlVQU05OSVFMVk8wVy4u
RaDCAN

RaDCAN is designed for clinicians, researchers, students, early career researchers, academics, health professionals, and organisations involved in rare disease research or care across Northern Ireland.

Members can share their own research updates, publications, or opportunities, be notified about research collaborations and funding calls and stay connected with regional clinical and academic developments

If you are working in, studying, or supporting rare disease research, RaDCAN helps you stay informed and connected with peers across the region.

 

 

RaDCAN : Link - https://forms.office.com/Pages/DesignPageV2.aspx?subpage=design&token=1040ef673d74415dabeb45ed171244bd&id=6ner6qW040mh6NbdI6HyhtYgSNgU1wNLq3lBnvdJnkxUOVdWQjU3RUY4MU9QR0pZMVRaMkg0WERBQy4u
Rare Disease Society

For students interested in rare diseases, our Rare Disease Society at Queen’s University Belfast creates a dedicated space for students to learn about rare conditions, connect with people with lived experience, and engage with one of the University’s key research strengths. 

By connecting students with researchers, charities and patient groups, the society contributes to a more informed, engaged and collaborative research culture. 

Rare Disease Society : Link - https://forms.office.com/pages/responsepage.aspx?id=6ner6qW040mh6NbdI6Hyht5zi-T_5URKnx0GOinHLrdUNjY2S0c5MjJCREJRWVhBS1RBSzEyM1JLNS4u&route=shorturl

Personal and Public Involvement and Engagement (PPIE) in Rare Disease Research

When we help each other out and share expertise, we make real progress moving forwards Stronger Together.  Most of our rare disease research at Queen's University Belfast is conceived, co-led and / or co-authored by PPIE partners.

Our rare disease team welcome conversations for new research ideas or contributing to current research at any stage. We have a local Rare Disease Patient and Public Committee who help us consider new research ideas, develop research, and co-produce research outcomes. Expressions of interest to join this panel are always welcome - we need members with diverse experiences to help ensure we're performing the best research possible in the most efficient, effective, and practical manner. 

If you are an individual, family, or friend with lived experience who wish to shape rare disease research locally, please join our RARDTAC community and express your interest in PPIE.

In doing so, you may be invited to:

  • participate in research prioritisation and design discussions
  • review study materials
  • share insights that guide meaningful, patient‑centred research
  • contribute to improving how rare disease studies are carried out
We also welcome conversations for new research ideas or contributing to current research at any stage - just send us an email!

* Whether you are new to research or have previous experience, your voice is essential, welcomed, and valued *

 

Student Rare Disease Society

Are you a student with an interest in Rare Diseases?

Join the QUB Rare Disease Society!

For students interested in rare diseases, our Rare Disease Society at Queen’s University Belfast creates a dedicated space for students to learn about rare conditions, connect with people with lived experience, and engage with one of the University’s key research strengths. The society offers educational talks, awareness events, volunteering opportunities, and networking with researchers and clinicians, providing students from all disciplines with valuable insight into health equity, patient-centred research, and real-world impact. This enriches the student experience by building knowledge, skills and career pathways in research, healthcare, policy and advocacy.

For those also living with a rare disease, the society fosters early engagement, supporting public involvement activities and helping to amplify awareness initiatives across campus and the wider community.
By connecting students with researchers, charities and patient groups, the society contributes to a more informed, engaged and collaborative research culture. 


Rare Disease Early Career Research Community

Early Career Researchers play a vital role in strengthening rare disease research at Queen’s, bringing fresh perspectives, new skills and innovative approaches to an area where creativity and collaboration are essential.

Rare conditions often present complex challenges, and supporting ECRs ensures a new generation of scientists, clinicians and interdisciplinary researchers are equipped to drive progress in diagnosis, treatments and patient‑centred care.

Through our studentships, volunteer roles (contributing to the QUB Future Ready Award), training opportunities and cross‑sector partnerships, we are committed to helping emerging researchers build their expertise, develop meaningful networks and contribute to research that can transform lives across Northern Ireland and beyond.

If you require any more information or would like to suggest some research ideas, please contact us.