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Research Foundation

Rare Illness Research Foundation

Welcome to The Rare Illness Research Foundation

Please take a minute of your valued time to take on board the details below in order to understand the importance of this ongoing campaign to fight against life threatening or debilitating rare illnesses that can affect anyone at any time. We are a totally none for profit  organisation that prides itself in keeping administration costs to the bare minimum working alongside the NHS throughout the UK who’s main concern is helping others who feel there is no one there to understand or assist.

It is hoped that you, the reader will never have to witness this, but imagine your child, you, a family member or any loved one being diagnosed with a life threatening or incurable disease, devastating news under any circumstances. Once the initial shock subsides many of us would attempt to find out as much as possible with regards to information on the disease and the support groups available.  What then if you discovered that no matter how you searched there was very little known about your condition and no organised support groups or sufferers forums, would you feel alone?  The Rare Illness Research Foundation not only raises funds to find cures for such diseases it also puts people in touch with each other giving them the opportunity to communicate with people who have been diagnosed with the same or similar conditions.  We don’t claim as much as a problem shared is a problem halved but it is a known fact that people suffer more when they feel they are suffering alone.  This is a situation that we and I hope you, the reader, fell should not be allowed to continue.  A secondary factor in this situation, once you have come to terms with your actual condition, is that you will most likely find there is very little support for the position of sufferers or family members who’s day to day lives are thrown into turmoil, constant trips to hospitals or specialist clinics and in many cases this makes normal day to day work, without an extremely understanding employer that is, considerably difficult in most cases.  In accordance with our aims and goals (see aims and goals section on our sites home page) we intend to assist financially with the likes of necessary equipment required to make life liveable and out of pocket expenses for sufferers and their families on the basis that no other agencies are able to provide the necessary assistance.  As we progress in our fund raising and our awareness campaign we intend to directly fund ethical research into these diseases with a view to obviously finding, where possible the cure, and in the short term advancements that will make life more comfortable lessoning the impact of the condition its self.  Every small step takes us ever closer to one of our main aims and that is to let people in this position know that they are not alone and yes as tough as normal life may be,  for every one financially at this time there are people out there who want to and indeed will help where ever possible.

dfAlthough it is extremely important to maintain a healthy life style taking on board advice and recommendations with regards to diet, exercise and healthy living that in its self is not a guarantee, as there are none, that the fittest of people in their prime will not be directly affected by a rare illness. A case in point is that of Darren Fletcher a professional footballer at the height of his career was struck down by Ulcerative Colitis.

Darren’s illness, through his suffering, has been brought into the public eye to a certain extent because of his position as an international footballer for Scotland and a premier league player with Manchester United.

We wish Darren continual health and praise those that have brought Ulcerative Colitis in the public’s eye.

We at the Rare Illness Research Foundation are here to assist those who might not have the support that was in place through the understanding of Daren’s employers, with regards to all forms of illnesses that are considered as life threatening or debilitating.

As this campaign progresses we hope to establish a register of rare illnesses through those within the NHS or its partners involved in the treatment or research into possible cures.

We need to work alongside the business community across the UK who will be an integral part of these plans and support in the form of advertising with exclusivity within the website and future publications.

Without your support none of this would be possible.

The grant procedure has been designed to make sure that all recipients are fully aware that this would not be possible without the support of the advertisers above and below the grant application form.

Please contact Anthony Hughes

info@nmo-ukresearchfoundation.org

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