Useful Contacts

Vasculitis UK and Vasculitis Foundation
www.vasculitis.org.uk and Vasculitis Foundation www.vasculitisfoundation.org , we work very closely with both these organisations to provide support, raise awareness and keep up to date with latest treatments/research.

Behcet’s Syndrome Society http://www.behcets.org.uk/ Local contact is Fionnuala McKinney bengie15@aol.com

PMR/GCA UK NI Branch contact Caroline Stewart pmrgca.ireland@gmail.com

Renal Disease Guide
This is a useful booklet on Kidney disease, with explanations of what kidney disease is, tests and treatments involved and useful information on how we can help ourselves with diet and lifestyle
(View PDF here)

Irish Kidney Association 

Northern Ireland Kidney Patient Association http://www.nikpa.org/

The Rare Kidney Disease Network
Link to research being carried out in ROI into Vasculitis and Kidney Disease.We have 2 members who sit on this board as patient representatives. For those interested in taking part in research, these are the contact details, ring  +353 1 896 4810  or email rkdbiobank@tcd.ie   Check our news section to learn of developments as a result of the research being carried out here.

Arthritis Care
www.arthritiscare.org.uk and www.arthritisireland.ie run regular courses on managing your long term condition, providing useful information on managing pain, stress, relaxation, exercise, improving independence and self confidence. Despite being Arthritis groups, the information is very relevant for many chronic illnesses and so the courses are generally available to all who apply. Two of our members, Emma Tinsley and Nikki Wheatley, are now helping to run these self help courses and can provide further information if required – emmadtinsley@googlemail.com and wheatleynichola@gmail.com. Both these sites also have excellent links to drug information sheets.

 Support and Benefits in NI  www.nidirect.gov.uk is a good website for getting information on what you might be entitled to and how to apply for it. There are facilities online to apply for the benefits and even the Blue badge scheme. www.dsdni.gov.uk and www.adviceguide.org.uk/nireland/benefits are also useful websites to get information from.

Support and Benefits in ROI www.welfare.ie gives information on benefits, who can claim and how. Forms can be obtained by sending away for them or downloaded from the site. www.citizensinformation.ie is another useful site which also gives details on how to apply for a medical card or GP card to help with meeting costs of medical care. This site advices on who is eligible and what income is not considered when being means tested.  

Northern Ireland Rare Disease PartnershipWe attend meetings/ functions organised by the Northern Ireland Rare Disease Partnership (NIRDP), which allows us to have input to major healthcare decisions in NI such as the NI Rare Disease Plan and the draft Control of Data Processing Bill. We currently have a member on the board of Directors in this organisation. www.nirdp.org.uk

Patient and Client Council NI
We have a patient representative on this board keeping us up to date with recent developments and putting forward the views of a patient with Vasculitis.

Rare Disease UK (RDUK) 
www.raredisease.org.uk is the national alliance for people with rare diseases and all who support them. They advocate that everyone living with a rare disease should be able to receive high quality services, treatment and support, and hold annual regional meetings which we attend.

Specialised Healthcare Alliance 
www.shca.info, The Specialised Healthcare Alliance is a coalition of patient-related groups and corporate members with a strong record of campaigning on behalf of people with rare and complex conditions in need of specialised care. These services cover a wide range of conditions.

Irish Platform for Patient Organisations, Science and IndustryWe attend meetings run by IPPOSI (Irish Platform for Patient Organisations, Science and Industry) to help us keep informed of developments in healthcare, network with similar organisations and avail of information courses. One of our members currently sits on the board of directors in this group. Visit their website for information on upcoming workshops, link to Health Technology Assessment updates, and information on Clinical trials www.ipposi.ie 

European Patient’s Academy in Therapeutic InterventionThrough this contact (IPPOSI), we have been able to have one of our members accepted onto the EUPATI patient Expert course in Research and Development. This intensive, European wide (28 countries), online course, educates re the R&D process so we can be better informed as to how we can get involved earlier, and liaise effectively with industry and researchers. The plan is to share this knowledge within our group and other patient groups to improve awareness of patient involvement in research. Please contact Julie Power (julie@vasculitis-ia.org) or visitwww.patientsacademy.eu for further information.

FibroIreland at www.fibroireland.com includes useful information and workshops on managing symptoms we share with fibromyalgia. They have branches throughout Ireland. 

Family Carers Ireland, at https://familycarers.ie have branches all over Ireland and provide support and information for carers.

Carers Trust Northern Ireland at https://carers.org, or price@carers.org provide support for carers in NI. 

Brainey App – an app being developed to help with managing Fatigue. For information on managing this difficult symptom, contact the designer of the app Niamh Malone -braineyapp1@gmail.com. Niamh has personal experience of living with fatigue and created this app to help her and her caring circle learn how to recognise signs and management techniques to avoid debilitation due to fatigue. 

Sleep Apnoea, for advice on managing sleep apnoea, contact Mark Rowe at  m.rowe@live.com. Mark is a Clinical Physiologist and Sleep Apnoea Specialist who has personal experience of living with Sleep Apnoea.

Vasculitis Ireland Awareness is a web portal for the dissemination of information on Vasculitis and related ailments. Anything appearing on the website should not be considered an endorsement or recommendation unless specifically so stated. Vasculitis Ireland Awareness is not an association or company.