Invisible Value Syndrome

It sounds a lot like a rare disease… but it’s neither a disease, nor is it rare.

It’s an unfortunate mentality that exists surrounding the ability to accurately quantify return on investment from a donation to a charity where the outcome isn’t visible to the donor.

For some organisations, such as those who fundraise to aid patients with physical deformities that require reconstructive surgery, donations can be calculated on a per patient basis and the outcome can be physically seen - justifying the expense and providing the donor with peace of mind that it was allocated as intended.

Society, unfortunately, has an ingrained perception that “seeing is believing” (understandably so) which is exacerbated by social media and the need for public acknowledgement. “Before and After” photos provide sufficient emotional encouragement for potential donors to contribute and sharing them satisfies the need for public affirmation.

But what about the organisations whose work is, for the most part, invisible?

Organisations like ours that advocate to change legislation for those who have been unfairly discriminated against on the basis of health. Who advocate to change policies for improved quality of life for those affected by rare conditions and who utilize time and expertise to create awareness in the hope of reaching those battling misdiagnosis. Whilst the eventual outcome may have tangible evidence (in the form of new legislation that makes a monumental difference in the lives of many) – it takes many months, if not years, of advocacy to effect such change – which comes at a significant expense that needs to be fundraised for.

We can’t accurately calculate how much it would cost to donate to one patient who would be positively affected by the work we do as the enormity of our objectives means it positively impacts all future patients diagnosed with similar conditions. Similarly, the before and after photos may look the same, but what can’t be visually depicted is the significant improvement in the quality of life, or even possibly length of life, for the patient.

As Nelson Mandela once said, “Your playing small does not serve the world” and that is a motto which we live by.

Whilst we don’t underestimate the value of the smaller, quicker wins - such as fundraising for necessary medical equipment and procedures which we also assist with – we are determined to leave a legacy in the form of legislative and policy changes which serves not only current patients, but all those who may find themselves in a similar position in the future. Statistics indicate that 1 in 15 South Africans will be affected by rare diseases in their lifetime. It’s an honourable goal – and it’s very much do-able, but requires time, money, expertise and patience from donors who won’t expect to see immediate results from their donation.

Which brings us to our diagnosis… we suffer from Invisible Value Syndrome. It is difficult for us to quantify the value of what we do (until we’ve done it) and subsequently challenging to define it in a sufficiently emotive manner to motivate donors to choose our cause over others.

So, if there are 5 things we would like donors to understand, it would be the following:

1. Even superheroes have invisible superpowers – just because you can’t see them doesn’t mean greatness isn’t unfolding.

2. As the saying goes, the very best things in life take time – we’re working to make lasting changes to serve a greater population than just those we presently represent.

3. Actions speak louder than words and our track record proves that we put your money where our mouths are with a number of large-scale victories already achieved.

4. By donating toward Rare Diseases SA you’re investing in a legacy that could serve your own family in generations to come.

5. We can provide Section 18A Tax Certificates which allows you to claim tax benefits from your donation.

So if you, or your company, are in a position to donate towards a good caused this year or to select a beneficiary for CSI projects and programs, please consider Rare Diseases South Africa.

Rare Diseases South Africa (NPO 120-991)

www.rarediseases.co.za