At the Rare Ireland Conference 2026, Portobello Institute's health science tutors discussed the role of communication in empowering people with rare conditions and invited families to help shape a student-led allied health clinic.

Held on 16 October in Athlone, the annual conference brought together people living with rare conditions, their families, and healthcare professionals from across the country. It created a space for the community to share their experiences and advocate for meaningful improvements to Ireland’s healthcare services.

Representing Portobello Institute was Jennifer Grundulis, a CORU-registered speech and language therapist (SLT) with over 25 years’ experience. She tutors on the MSc Speech and Language Therapy (Pre-registration).

Joining her was Yvonne Phelan, a CORU-registered occupational therapist (OT) and Programme Development Lead for the MSc Occupational Therapy (Pre-registration).

Jennifer delivered a presentation on augmentative and alternative communication (AAC), and later in the day, Yvonne introduced plans for Portobello’s student-led clinic, which is currently being developed in Dublin.

Jennifer and Yvonne (1)

Jennifer Grundulis and Yvonne Phelan

Listening to Communities and Understanding Healthcare Gaps

For many families affected by rare conditions in Ireland, accessing the right healthcare can mean facing lengthy waiting lists and limited availability of specialist services.

The Rare Ireland Conference shed light on these challenges, highlighting the urgent need for greater access to allied health professionals, including speech and language therapists, occupational therapists, physiotherapists, and dietitians.

Both Jennifer and Yvonne were struck by the determination of families advocating for appropriate care, with some parents having to become experts in their loved ones' conditions due to gaps in healthcare professionals' knowledge.

As an institution preparing the next generation of healthcare professionals, Portobello Institute is deeply committed to understanding the realities of the sector and being part of the important conversations shaping its future.

“Attending conferences like Rare Ireland allows Portobello Institute to really hear what these communities need, which allows us to get creative and find ways to provide meaningful support,” explains Jennifer.

Yvonne adds: “We look at what healthcare and therapy services look like in Ireland on a broader level, but hearing what families are actually experiencing on the ground is very different.

“The lack of access to allied health professionals came up in nearly every presentation. It’s so important that we hear these experiences first-hand as we develop our programmes and train future healthcare professionals.”

Empowering Families Through Communication

Under the theme Stronger Together: Amplifying the Rare Voice, the Rare Ireland Conference highlighted the latest developments in rare disease research and the value of learning directly from patients and families to improve healthcare provision.

Jennifer's presentation explored how AAC can empower people who experience difficulties with spoken communication, particularly those living with rare conditions.

AAC refers to methods and tools that help people communicate alongside, or instead of, spoken language. These can include gestures, communication boards, and electronic speech-generating devices, depending on an individual's communication needs.

For people who have difficulty expressing themselves through speech, AAC can offer greater independence and more opportunities to participate in everyday life.

“The main message of my presentation was one of empowerment for the loved ones and caregivers of the person with a rare disease,” says Jennifer.

“You can support your loved one with AAC. Don't pressure, don't push. Take your time to learn and get comfortable, and get the community to join in.”

Rare Ireland 2026 Presentation

Inviting Families to Shape a Future Student-Led Allied Health Clinic

For families who have spent years advocating for appropriate healthcare services, the opportunity to have their voices heard before a new clinic even opens is particularly meaningful. That was the invitation Yvonne extended to attendees at Rare Ireland 2026.

During her presentation, Yvonne introduced Portobello Institute's plans for a multidisciplinary, student-led allied health clinic in Dublin, expected to open in September 2027.

The clinic is being developed to provide supervised clinical learning opportunities for students across Portobello's four pre-registration master's programmes:

Students will gain practical experience working with members of the public under clinical supervision, applying their knowledge while contributing to the provision of therapy services.

The clinic is expected to operate during designated student placement periods rather than year-round, with the availability of services depending on the placements taking place.

Yvonne's presentation went beyond introducing the clinic. She invited people living with rare conditions and their families to share what they would want from the service, ensuring their perspectives could inform its development before plans are finalised.

A Positive Response to Clinic Plans

Portobello's plans for the student-led clinic sparked immediate interest at Rare Ireland 2026, with families eager to learn more about the proposed services and contribute to its development.

“The response to the student-led clinic was really encouraging,” shares Yvonne. “Even as I was walking out to my car, I was stopped by five people asking how they could access the clinic and when it might be available.”

She adds: “I think what really resonated with them was that we're involving families from the very beginning and genuinely want their input in shaping what the clinic could look like.

“There was a real willingness to connect and collaborate with us, which was lovely to see. I think there’s huge potential for both our students and the families involved to learn from one another.”

Jennifer also reflected on the valuable feedback received from families during the conference.

“We shared that the student-led clinic was being created but that we needed the input from the rare disease community,” she says.

“Many families were excited about the opportunity and spoke to us to advocate for their needs, including accessibility and student training in specific conditions such as Childhood Apraxia of Speech.”

Explore Health Science and Have Your Say in Portobello's Future Clinic

If one thing was clear from Rare Ireland 2026, it's that the people who need healthcare services must have a voice in shaping them.

As Portobello Institute continues developing its student-led allied health clinic, input from the wider community is welcomed. Stay up to date with the latest developments and share your views by following Portobello Institute on social media or contacting our teaching team directly.

Interested in becoming an allied health professional? Explore our health science faculty and discover the possibilities for your future career.