Symptoms, Treatment and Research
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/
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)
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, this is the contact website.
Drugs and Self Help Groups
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 – email@example.com and firstname.lastname@example.org. Both these sites also have excellent links to drug information sheets.
Support and Benefits
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 Partnership
We 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 Industry
We 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. Visit their website for information on upcoming workshops, details of past workshops, link to HTA updates www.ipposi.ie
European Patient’s Academy in Therapeutic Intervention
Through 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 with other patient groups to improve awareness of patient involvement in research. Please contact Julie Power (email@example.com) or visit www.patientsacademy.eu for further information.