Academic Paper from Cliona’s Foundation

The report sets out three key recommendations:

• Requirement to establish a national database on families caring
  for children with a life-limiting condition.
• Government to establish a new ‘looking after a child with life limiting illness’
  grant for families with a child suffering from a life-limiting condition.
• Cliona’s Foundation to tailor its support services to meet the unique needs of
  the families including partnerships with services companies to provide a range
  of assistance to the families.
  Download report. 

Park the Charges: A campaign from the Irish Cancer Society

• Patients undergoing cancer treatment should receive free or significantly reduced car
  parking;
• Patients should be informed of parking exemptions in their first appointment letter;
• Concessions should be widely promoted and easy to understand and apply for;
• Responsibility for informing cancer patients about their rights should rest with a specific
  member of staff;
• Healthcare professionals should be made aware of free parking schemes/concessions;
• Any future tender arrangements for private car park operators should clearly place the
  onus on operators to provide discs or tokens for cancer patients;
• Charges should be displayed clearly and well publicised at car park entrances and wherever
  payment is made, along with on the hospitals website;
• Any concessions should also be clearly advertised;
• Transparency in parking charges should be encouraged. Hospitals must publish car parking
  costs, revenue raised from car parks, the use of that revenue and tenders/contracts with car
  park operators publicly;
• Weekly caps on charges should be introduced to protect regular patients and visitors

Download the report here

Research Report – Living with a rare disease in Ireland during the Covid-19 pandemic.

The report, Living with a Rare Disease in Ireland during the COVID-19 Pandemic, has highlighted how COVID-19 is hindering access to routine treatment and care for people with rare diseases, and is having a detrimental effect on their health and well-being. The research provides a snapshot into life today for people with rare diseases, with responses from 176 people living with a rare condition, their family members and their carers, from across the island of Ireland. It was undertaken by Rare Diseases Ireland, the national alliance for rare disease voluntary groups, in the two-week period leading up to May 6.

Download report here