How you can help

Aren’t these disorders rare?

Not always. Drug hyper-sensitivity due to a particular genetic purine enzyme defect is a common medical problem. Pre-treatment referrals for diagnosis have escalated, helped suffers and reduced NHS costs.

PUMPA has already improved the lives of patients and their families by:

• distributing information to raise awareness and advance recognition of these disorders
• putting patients who so wish in contact with similarly affected families, giving them the relevant information about the disease and what help is available
• raising funds to support research by the Purine Research Unit at St Thomas’ Hospital.

We now need to stimulate awareness throughout Europe and develop more patient support groups. Improved diagnosis is essential to provide sufficient patient numbers to speed progress. Research is equally vital. No cures will be found without research. A collaborative approach by experts in different fields is essential

But research is costly. Such ‘orphan diseases’ (i.e. rare diseases) do not attract funding.

Please help us – we need your support.

How can you help?

As with most charities, our greatest need is for money so that we can keep up and improve the good work we have been able to do so far. We raise most of our money by holding individual fund-raising events. Even if you cannot attend these events, you can contribute as follows:

By joining PUMPA

...and assisting our fund-raising team and our families with these disorders in their activities. A strong membership is essential if afflicted families are to be helped and sufficient funds raised. The annual subscription is only £10.00 for an adult and £1.00 for a juvenile, (under 16). With your membership card you will receive a regular newsletter, copies of PUMPA publications and invitations to all events.

PUMPA already has members in Belgium, Germany, France and Poland and is in contact with LND (Lesch-Nyhan Disease) societies in France and Italy.

Should like more detailed information we would be very happy to send you some. The Secretary will also be able to give you the PUMPA patient contact name for your particular disorder.

By sending a donation

No matter how small, every amount is vital for continued research and support. Use Gift Aid if you wish, and save Tax.

By signing a covenant

Sign a covenant to donate a fixed sum over a period of years (thus saving tax). Appropriate froms are obtainable from us on request.

Or by remembering us in your will

Details of how you can do this can be obtained by writing to our office.

Donations can be sent to:

Please make cheques, etc., payable to PUMPA.

Or payments can be made directly to our account:

On behalf of the patients, their families and the research team: thank you for your generosity and kindness!

Membership is open to anyone. Please print out this application form and send to PUMPA at the above address. If you prefer, you can download a pdf version of this form to print (130kb).

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Membership application form

I/we wish to become a member(s) and/or make a donation to the Purine Metabolic Patients’ Association.

Enclosed is a subscription for one calendar year: £10.00 (€16.00) per adult, £1.00 (€3.00) for children under 16.

Please tick if you are joining as:

a family member or patient

a friend

other

Enclosed is a donation to PUMPA.

(Please make cheques, etc., payable to PUMPA)

Gift Aid Declaration (UK residents only)

Please treat the enclosed donation/all donations I make from the date of this declaration (until I notify you otherwise) as Gift Aid donations (delete where applicable). I confirm that I pay an amount of income tax and/or capital gains tax at least equal to the tax that PUMPA reclaims on my donations in the tax year (currently 28p for each £1 given).

You can cancel this declaration at any time by notifying PUMPA. If in the future your circumstances change and you no longer pay tax on your income and capital gains equal to the tax that the charity reclaims, you can cancel your declaration. If you pay tax at the higher rate you can claim further tax relief in your self-assessment tax return. Please notify PUMPA if you change your name or address.

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