Research - support

[LadyBothwell]

Hello, Im a member of the Pernicious Anaemia Society which hosts this forum. I see from their communications that they are working on a lot of things at the moment including responding to the NICE guidelines on our behalf and funding research into lots of different things relating to pernicious anaemia and B12, family links, frequency of treatment, self injection etc. I think from seeing the posts on this forum that many are not members and I wondered why that is. It is not expensive to join £10 a year and is open to everyone worldwide whether or not you have a formal diagnosis of PA or not. It is important in my view that when they do research they ask people like us what it is like living with the condition and about the many challenges we face getting diagnosis and treatment. I know not everyone can afford to join but if you can or can make a one off donation then that would seem to be invaluable to furthering research. They are a small charity and rely solely on donations and membership and volunteers. pernicious-anaemia-society..... They are different from some of the other organisations because they do fund phd students and research and are a respected global organisation from what I see.

[wedgewood]

I second that LadyBothwell . Well put !

[Orchard33]

I totally agree.

[Suzibelle]

I took out a life membership of PAS for that very reason, LadyBothwell, as I'm on the other side of the planet and can't do much else to support them! I'm a scientist so will always support genuine research.

[LadyBothwell]

Hi there. The link in my post leads you to how you can join or donate. You might want to edit your post not to publish your email address as this is a public site

[Mixteca]

I joined when I first suspected B12 deficiency and then I left again - it wasn't about £10 it was about access and being able to communicate via email with the society as opposed to phoning up. I explained this in an email.

[LadyBothwell]

oh! I’ve been able to communicate by email and phone. I think they prefer email because there isn’t many of them on the help desk. And there’s a members section and a newsletter which i enjoy reading. And I’ve signed up for some surveys. PAS and this forum helped me enormously educate myself and my GP

[PaintLadie]

I did not know I could join. I am in the USA.