Register with the aplastic anaemia trust - why?

• We’ll create an annual report for everyone to read that shows how many people we know have been diagnosed, what conditions they have, and what area of the UK they’re being treated in.  

• We’ll use that information to plan our own work – for example if there’s a group of people registering in Wales, we might look to bring a coffee morning to you. If we find we’re only reaching women, we’ll have a good hard look at what we can do to show men what we have to offer!

• If you tell us you’d like to hear from us, we’ll send you emails, magazines and information that’s relevant to you  

We will never ever share (or sell) your contact information or personal details with anyone outside The Aplastic Anaemia Trust, ever, without specifically asking you. This is covered in our privacy policy.

The only information from the registration that would be shared publicly would be when you're counted in big numbers and totally anonymous. For example we might say on our website that "we supported (x number of) people with aplastic anaemia last year." That's it!

If you have any questions at all about this, you can email us at [email protected].

OK but why are you asking me that...

Every question is there for a reason! If you're super interested, you can read on to find out why we're asking each question on the registration form. 

First name and surname

So our team know who you are and what to call you if you get in touch. 

How can we help right now?

After someone registers on our website, our support team will read the information in this box and send you whatever you need right now. For example if you say you're keen to meet people near you, we might let you know of any events happening in your area, or if you're having trouble explaining the condition to your child, we'll pop a helpful guide and kids' book in the post. 

What condition(s) have you been diagnosed with? (Please select all that apply.)

We'll use this information generally to see how many people we're in touch with who have these conditions, which will tell us if, for example, we might need to publish more information on that condition or offer more training for our support team. 

We'll also store this information with your contact details so we can invite you to specific events about your condition, for example if we have a coffee morning and we know lots of people with Fanconi Anaemia are going to come we'll let you know about it, or if NICE get in touch with us and ask our opinion about a specific drug that's taken by people with PNH, we might email to ask if you'd like to tell us your opinion of it. 

Your date of birth

We have information for both children and adults - knowing your date of birth means we'll only send you the information appropriate for your age. 

Having this information for everyone means we can tell if we're reaching both adult patients and young families effectively. 

Your double birthday date

Our support team like to send people a card on their double birthday. 

When were you first diagnosed?

This is really useful information because it's widely understood that somewhere between 100-150 people are diagnosed each year in the UK. If we know which year people registered with us are diagnosed, we can work out approximately what percentage of people with AA in the UK are finding our charity. Then we'll know if we need to spend more money and time on promoting ourselves to reach more newly diagnosed people, or if you're mostly already managing to find us!

If we work out that we are registering a large percentage of the people diagnosed with rare bone marrow failure in the UK, that makes our data really exciting, because it means it's representative of the patient population - which means our reports and what we have to say will be of interest to more organisations and healthcare providers.

What stage would you consider yourself to be at regarding your condition?

We want to send you information that's most useful to you. These journey stages were designed by our patient reference group to help us do that. Select the one that feels right (or more than one) to get communications from us that are right for you. 

Even if you're not asking for any communications from us, it's still useful for us to know this, so we know how many of the people we're reaching are at each stage - so we can prioritise our work. 

Do you have any disability or access needs that would be helpful for us to consider if we get in touch with you?

This is to make sure we're considering these needs if we're in touch with you, for example if you tell us you have trouble with hearing on the phone, we'll drop you an email instead. 

Address 

This is for us to send any printed information you need. If you tell us that you'd like us to be in touch via post, you'll also get our magazine (1-4 magazines per year.) We don't mail out regular fundraising appeal letters. We might send the occasional thank you or Christmas card. 

If you don't want post from us, it's still useful if you can fill in your address so we know where our community are. This information helps us to show funders that we are supporting people across the UK, not just in particular areas, and helps us plan where it might be useful for us to offer events. 

Phone number

We'll only use this to support you or for sensible admin reasons (eg if you can't get into a Zoom call or an event you booked a ticket for has been cancelled.)

Email address

Your email address is really useful to help us match this registration information with any existing records we have for you, so please fill it in, even if you don't want emails from us!

We'll only send you emails if you check the box further down giving us permission to email you. 

Facebook profile link

If you use the FB group regularly, especially if you don't use the same name in there, this helps our support team understand who they're talking to!

Would you be interested in being invited to volunteer in the following ways?

If you check these boxes, we'll contact you when we have opportunities for you to do those things. Checking the box doesn't commit you to these jobs!

How did you hear about The Aplastic Anaemia Trust?

We know, everyone asks this, but it's really useful for us to understand things like whether we're being recommended by clinicians or not in specific areas, and whether people are finding us because of the Facebook group, or the other way around. 

How would you like us to keep in touch?

We'll only be able to send you our occasional newsletters and nice things if you check these boxes, so please do check them if you think we might be useful to you. It's very easy to unsubscribe later whenever you like. 

We would never just stick you in a WhatsApp group - we might send you a link inviting you to join one if it's something we know you're interested in. 

How would you describe your gender?

We want to make sure we're supporting people of all genders, so this will help us spot if we're reaching mostly men or mostly women. 

As we're supporting such a tiny rare community already, we don't think it's necessary or appropriate for us to collect data on whether you're trans or cis, so that's why we haven't asked for this. Choose the gender that's right for you.

When we contact you, our team will probably assume your pronouns based on the gender you select here, but if we're getting it wrong you can always let us know and we'll update your record. 

If you opt in above for the volunteering opportunity "Join online group discussions to share my opinions and improve healthcare services and treatment", and then register for a discussion like this in the future, we would use this gender information to check that we have a reasonable representative split of genders in the group of people registered (so we could eg invite more men to come along before the event.)

Ethnic origin

We're really interested to know if our charity is reaching numbers of people of different ethnicities that reflects the UK population. This is important because aplastic anaemia and other related conditions can be more prevalent in specific ethnic groups, so if we're not in touch with those people then we are not doing a good job of representing people with AA in the UK as a whole. We also know that people's experiences of the healthcare system and specific treatments (for example bone marrow transplant) can be different for people of different and mixed ethnicities. So if you check the box above to say you're interested in sharing your story with us, we might get in touch with you to ask for your input in specific campaigns. 

If you opt in above for the volunteering opportunity "Join online group discussions to share my opinions and improve healthcare services and treatment", and then register for a discussion like this in the future, we would use this ethnic origin information to check that we have a reasonable representative split in the group of people registered (For example, so we can make sure we're not asking only White British people about their experiences of bone marrow transplant.)

Why aren't you asking me about my sexuality/ economic background/ social status / other?

It's really important to us that we're only asking you for such personal information if we're definitely going to use it for something important, and we can tell you what we're going to use it for. At the moment, ensuring we're able to support people of all genders and of any ethnic origin are the strategic priorities that we're focussed on.

If you have any questions or feedback about this we would love to hear from you. Email us at [email protected].

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