Has anyone started a charity, and how do you do it?

[MollyGaves]

I have a rare autoimmune disease. I belong to a great Facebook support group. People are fab, always helping the new people etc etc. But I feel there’s a place for more structured way of finding out information and wondered about how I would go about setting it up. I’m assuming I’d set it up as a charity.

I would expect it to be website based.
I would expect that there would be costs to this and how would that be funded.

I’m wondering how feasible this is, how much time it would take etc.

Or should I just leave things as they are, it works well and just invest my time in replying to people as they ask. I’ve been thinking about this for over a year but don’t know if I’m ‘qualified’ to get it up and running and keep it going.

There a real lack of information to hand by doing a random search online about this disease and unless you know the name of the disease it’s hard to find out what the problem is, I had it for 8 years, when it was suggested I had it. My doc and dentist both said, oh yes, I’ve heard of that but neither thought my symptoms were it.

There’s lots of parents with young children in our support group and I want to make it easier to find out about it online and support people through such horrid symptoms.

Are you in the UK? If so, which country?

If in Scotland, the charity commission is called OSCR, so I'd start by checking out their website. You'll need to decide what legal framework your charity will have - basically a charity is an organisation of some kind which has received charitable status. So it might be a limited company which is also a charity, or a sports club which is also a charity, etc.
You'll also need trustees, a bank account, and a constitution of some kind I believe, stating your charitable purposes/when you'll hold AGMs, how trustees get elected/chosen etc. There'll be lots of templates for this.
Sounds worse than it is! Good luck :)

What advantage do you see in registering a charity? What do you want to achieve?

I run a small charity. There are lots of reporting/administrative obligations. It can be worthwhile but depends on what you want to achieve. We apply for lots of grants to buy what we need to run, so for us it’s worth it, but I have a retired chartered accountant on board who basically spends 20 hours a month overseeing our finances.

EssentialHummus has a different experience to me. Maybe Scotland is easier than other places or something? All I do is send accounts and submit the annual report thing, just once a year. Takes ten minutes. Apart from that OSCR don't require any input (unless something goes wrong). Being a charity is no effort at all, after the initial set-up.

But yes, do consider whether it's necessary at all. Obviously if you are hoping people will donate money to you, it's likely going to need to be a charity. Ditto if you want to apply for funding (although some funders aren't fussed if you're a charity or not). But if neither of these apply, is it necessary? Are you functioning as an information service rather than collecting donations?

Thank you for your replies.

I am in the UK.

I would be thinking on an information service initially. Funding I think would be to cover costs of web design and upkeep. Longer term I was wondering about a question and answer forum but not sure that this would be used. (I’m in another rare disease forum for my husband and all the people there seem to have migrated to Facebook, which is great but it doesn’t help on finding out about specifics.)

At the moment it’s all a bit of a pipe dream but I keep thinking perhaps someone will do it and if they did it would be really useful. So maybe it has to me me to start it but I’d want to make a good job of it so I’m not prepared to wade in until I’m certain I can make a difference.

Hope I’m answering this in the right place. New to mumsnet.

This is where my ignorance shows. I was assuming in order to collect money for paying for services to set up a service (ie paying for web design etc) I would need to setup a charity.

I am in England.

Could you link up with another umbrella charity instead? A family member has a very rare genetic condition and they’ve had some useful support and signposting from Unique Rare Chromosome, as an example (rarechromo.org/). They’ve a small charity as I understand it but already have websites, fact sheets, Facebook forums etc

I’ve had experience of running a school PTA charity (but not setting it up). The admin is not too bad but then we piggyback off the School’s website and haven’t registered for gift aid and are only just starting to look at online payments/donations so not too complex as yet...?

Just to add, I appreciate the condition you’re referring to might not fit under Unique but perhaps there are other autoimmune charities you could work with? At least until you see how viable it might be as an ongoing commitment?
Good luck

I work for a rare disease charity and it wouldn't be an easy task to set up from scratch with no prior knowledge.

I second that you should look at existing charities and see if there is an opportunity to expand under them although appreciate that it may not be possible depending on the nature of the autoimmune disease you have.

On a separate note, I have multiple issues caused by an autoimmune disease so good on you. I hope you find a way to do this.

@TotallyDisco

Could you link up with another umbrella charity instead? A family member has a very rare genetic condition and they’ve had some useful support and signposting from Unique Rare Chromosome, as an example (rarechromo.org/). They’ve a small charity as I understand it but already have websites, fact sheets, Facebook forums etc

I’ve had experience of running a school PTA charity (but not setting it up). The admin is not too bad but then we piggyback off the School’s website and haven’t registered for gift aid and are only just starting to look at online payments/donations so not too complex as yet...?

Thank you that’s a brilliant idea. It sits with another autoimmune disease but can stand alone so perhaps that’s the answer, get someone who’s already doing it to expand their site, and I could offer to help out in any way I could. I’ve never see my condition on their site but a mention of it even the smallest mention would be huge for anyone wanting to find out about it.

• I would expect it to be website based. I would expect that there would be costs to this and how would that be funded. *

I'm disabled and no longer work as a result but was a senior web architect, technical editor for a publishing house and an author, so I can sort you out a proper website for no fee, you'd simply need to fund appropriate hosting, domain name, any software requirements and your time to properly conceptualise and implement the project.

Simply PM me if you'd like a discuss it.

@WhipperSnapperSteve

* I would expect it to be website based. I would expect that there would be costs to this and how would that be funded. *

I'm disabled and no longer work as a result but was a senior web architect, technical editor for a publishing house and an author, so I can sort you out a proper website for no fee, you'd simply need to fund appropriate hosting, domain name, any software requirements and your time to properly conceptualise and implement the project.

Simply PM me if you'd like a discuss it.

Thank you.