DC Action Community Guidelines

[JayKayPee]

The aim of this community is to provide a supportive, informative and friendly community for people affected by dyskeratosis congenita or telomere related conditions.

By using the community you agree to post information that is primarily drawn from your personal experience.

We encourage that all posts are kept under a topic.

A new post should be started to discuss a new issue or question.

Content should never be abusive, malicious or deliberately misleading. Members should not paste personal contact information on the site, though they may choose to do so in the Messages module.

Members posting and/or answering questions on the site should not be assumed to be health professionals.

Users should report any abusive or inappropriate posts.

[DC_motheranddaughter Partner]

Hi JayKayPee

Just working out how to use this site. Great news- the doctors in Cambridge and Papworth interested in DC are starting an interest group to improve services and treatment. I'll be the first time that the haematology, lung and liver people have met up.

[SunraysandSaturdays in reply to DC_motheranddaughter]

That's great news. Can we be in the interest group?! Lol. Do you know if they have paediatric staff on board?

[DC_motheranddaughter Partner in reply to SunraysandSaturdays]

They have Anne Kelly who is a paediatric haematologist and various others - not sure whether they are adults or adult/children or just children - this is an informal meet up of Cambridge people who are interested. I will suggest a meeting where anyone interested can drop in. I'm hoping that everyone will want to combine their clinics (and get all the scan/other diagnostic facilities etc lined up) so that would be a good time to have a regular open meeting.

I'm collecting ideas to put to the group from us patients/families

[JayKayPee Administrator]

That’s brilliant!!

Can we develop a slide set for / with them

[DC_motheranddaughter Partner in reply to JayKayPee]

Good idea. We need to think about what we want to ask them for- I think that they will be listening.