Our Support
What We Do
The lack of education and awareness surrounding rare disease is evident in Ireland. Rare Ireland strives to be the voice of rare families in Ireland by:
- Advocating on their behalf
- Collaborating with other organisations and researchers
- Taking part in projects in the hope that they will improve care pathways and address the unmet needs of the rare disease community
How We Do It
We provide support in many ways, including:
- A safe space for parents within our network to engage with other rare parents
- Aim to put families of children with the same rare condition in contact with each other
- Send gift boxes to rare children during hospital stays
- Subsidise therapies, equine therapy and genetic counselling for members
- Link in with other rare disease organisations and work together in an effort to improve care pathways for people living with rare conditions
Daisy Furey age 8, absolutely loves animals and the fact she could take part in an activity without feeling different meant the world to her and us.
Why is Equine Therapy so beneficial for children with Rare Conditions?
Equine therapy offers unique benefits for children with rare conditions. Interacting with horses can improve social skills, confidence, and emotional regulation. The rhythmic motion of riding promotes balance and coordination, while the bond formed with the horse fosters trust and empathy. Additionally, caring for and riding horses provides a sense of accomplishment and empowerment, enhancing the overall well-being for these children.
How We Can Help
Genetic Appointments
Following a rare genetic diagnosis, families are added to a two year waiting list to see a genetic counsellor/consultant.
This appointment provides the family with all the information available and insight into the condition, how it may impact their lives and the likelihood of the same condition recurring in subsequent pregnancies.
Since 2021 Rare Ireland has worked closely with a private genetic consultant and offers financial assistance towards appointments, allowing our families to receive vital information in a more timely manner.
Therapies
We also provide financial assistance towards the following therapies:
- Speech and language
- Occupational
- Physiotherapy
- Music
- Play
- Equine
- Any other therapies our families need for their rare children and young adults to reach their potential.
- Every family’s needs are unique, contact us to discuss financial assistance towards the following therapies.
Hospital Stays
Families living with rare conditions face many prolonged hospital stays. We recognise the challenges facing our young people and their families during hospitalisations. To help lift their spirits and let them know they are in our thoughts, we send gift boxes and care packages to the hospital.
Counselling support
As carers for children and young adults with rare conditions, we acknowledge the strain this may have on mental health. We offer financial assistance towards counselling sessions for families who may be:
- Struggling with the impact of their family’s rare diagnosis
- Couples whose relationships are strained due to their diagnosis
- This service is available to parents/carers and siblings who are in need of this support
