Many members of our community will remember taking part in our recent National Community Survey, where we asked you all about what living with a rare bone marrow related condition is like. 

We're planning a campaign to make a big noise about the survey findings, and we need two volunteers who are willing to talk about their experiences publicly and on video. 

If you're interested in appearing in a video for our campaign, and potentially appearing in the media, we would love to hear from you. 

To take part, you'll need to be...

1. Either living with one of these conditions yourself, or caring for someone who does (eg a child or a partner):

• Aplastic Anaemia
• Congenital Anaemia
• Diamond Blackfan Anaemia
• Dyskeratosis Congenita
• Fanconi Anaemia
• PNH
• Shwachman Diamond Syndrome

2. Happy to talk on camera about your own experience of some of the challenges that our community told us about in our survey. We'd particularly like to hear from you about one or more of these aspects:

• The impact of the condition on your mental health, and possibly the positive impact of receiving psychological support
• The practicalities of living with the condition and the impact it has on your normal life. 
• The feeling on loneliness when you are diagnosed with something people have never heard of, being prevented from spending as much time with family and friends for various reasons.

3. Based in the UK, and happy for us to come and visit you to interview you at home. 

4. Willing to appear across a range of social media and news media, to have your name referenced (first name only is fine) and to have your photograph appear in the media.

5. Available for a short pre-filming interview (max 40 mins, online) at a time of your convenience over the next month to discuss your story - so that planning can be done ahead of filming.

6. Available in August to take part in a filming day, at your home, ideally with family/friends present, who are also happy to take part. Following the filming, the edited video will be shared with you to check you are happy with the content included.

7. Potentially available at the end of September for any media enquiries. This is not a requirement and can be discussed in more detail.

Are you interested?

Please drop Ellie Dawes an email at [email protected] or call 07956237939. We'll have a bit more of a chat about what this will involve and, if it sounds like a good fit, we will put your name forward.