Rare Diseases

Q1 2023 | A promotional supplement distributed on behalf of Mediaplanet, which takes sole responsibility for its content

“Innovation is at the heart of achieving equity for people living with rare diseases.”

Vicky

McGrath, CEO, Rare Disease Ireland Page 05 www.healthnews.ie

“Globally, an estimated 400-475 million people live with a rare disease, most of whom will never be diagnosed.”

Cameron Fox, Health Innovation Lead, World Economic Forum Page

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Our specialist services are helping to deliver the best therapy and support for children with cerebral palsy (CP).

Cerebral palsy refers to a group of non-progressive but often changing motor impairment syndromes secondary to lesions or anomalies of the brain arising in the early stages of development. The prevalence of CP in Ireland is approximately 2 per 1,000 live births, making it the most common cause of motor deficiency in young children.

The prevalence suggests there are at least 2,700 children with CP living in this country though the absence of a National CP register means that this population, and their needs, cannot be accurately determined.

A multidisciplinary approach

Following the implementation of Progressing Disabilities Services (PDS) nationwide, children with disabilities, such as CP, receive therapy locally with the support of clinicians with specialist knowledge and experience where required.

Central Remedial Clinic (CRC) National Specialist Services provide a full suite of Specialist Multidisciplinary Clinics including tone management, upper and lower limb orthopaedics, assistive technology and augmentative communication, specialist orthotics, specialised seating, feeding eating drinking swallowing (FEDS) and gait and movement analysis laboratory.

Our multidisciplinary approach means that children and families are seen by a full team of therapists and medical consultants who work together with the family to provide best-practice assessment and intervention.

Investment in education and training

Education and training form an important component of our national specialist services remit. Our staff provide virtual and in-person courses and talks both nationally and internationally. Research and evidence-based practice are a focus of our strategic plan and, in conjunction with academic partners in RCSI, the CRC successfully obtained three research grants in 2022 and we will begin recruitment for these important projects in 2023. Our services saw a 40% increase in referrals in 2022 and we are now looking to expand our team of therapists (physiotherapy, occupational therapy, speech and language therapy, dietetics, and psychology) in early 2023.

Our specialist services provide a supportive, dynamic and stimulating environment for therapists interested in working in the disability sector with a wealth of education, mentoring and support from our established multi-disciplinary teams.

Dr. Rory O’Sullivan PhD Head of Specialist Services, Research and Education, Central Remedial Clinic