-
Status
Received: on time
-
Income
£1.8K
-
Spending
£6.5K
Public benefits
The direct benefits from our purposes include reduced levels of isolation, anxiety and helplessness, improved quality of life and empowering those affected by any of the Vasculitis diseases in Ireland. Improved care and services for those affected by any of the Vasculitis diseases in Ireland, resulting in earlier diagnosis, reduced organ damage
and more effective and efficient treatment leading to an improved quality of life. The benefits are demonstrated through feedback from our members and their families, (including surveys and formal evaluations at our annual conferences) and feedback from Healthcare Professionals. We are involved in establishing a new, 2 year pilot Vasculitis Service in NI and in the Vasculitis Ireland Network (VINE) where we will be developing a care pathway and protocols for the treatment of the Vasculitis diseases in Ireland. Potential harm arising from Purposes - Potential inappropriate sharing of contact details. We are always aware of the need for confidentiality and respecting individual's privacy. To protect this, we seek permission before sharing contact details with fellow members and ask that everyone's privacy is respected. Similarly, we only share contact details of healthcare professionals who have agreed to same or whose contact details are freely available on the internet. Having a rare disease can be a frightening prospect, especially if reading about the prognosis on the internet and it is important to reassure people to work with the specialists and their medical team to ensure they are on the correct treatment. The charity's primary beneficiaries are people who have been diagnosed with any of the Vasculitis Diseases, their families and carers, who are living anywhere in Ireland. Other beneficiaries include the Medical Professions, Healthcare providers, medical and healthcare students, other support groups and the public. There is no private benefit arising from any of our purposes.
... [more] [less]What your organisation does
We are an All Ireland support group and are contactable by phone, post, email and social media. We hold meetings in various locations all over Ireland and hold an annual 2 day conference. These provide opportunities for people to talk to others in a similar situation, link and talk with professionals involved in treatment, management and research
of the Vasculitis Diseases. We contribute to raising awareness of the Vasculitis diseases by using printed and social media, liaising with local health providers and groups and giving talks at conferences and training events. We liaise closely with the Specialist Vasculitis consultants in Ireland and healthcare providers to improve Vasculitis care and research.
... [more] [less]The charity’s classifications
- The advancement of health or the saving of lives
- The relief of those in need by reason of youth, age, ill-health, disability, financial hardship or other disadvantage
Who the charity helps
- Carers
- Men
- Mental health
- Older people
- Parents
- Physical disabilities
- Sensory disabilities
- Women
How the charity works
- Advice/advocacy/information
- Counselling/support
- Cross-border/cross-community
- Disability
- Education/training
- Medical/health/sickness
- Research/evaluation
