Government launches survey about rare disease - LUPUS UK


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Government launches survey about rare disease

Paul_Howard profile image
23 Replies

In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease. This conversation aims to gather a range of views from the rare disease community. The views collected from patients, healthcare professionals and industry will be used by government to inform a rare disease framework to improve the lives of people living with rare diseases.

To start the conversation, a survey has been launched to understand the major barriers that those living or working with rare disease face. Please make sure your voice is heard by completing the survey by Friday 29th November 2019. It should take approximately 10-20 minutes to complete and can be accessed at

23 Replies
Lily77 profile image

Dear Paul, I have successfully completed and submitted the survey, best regards, Lily

Paul_Howard profile image
Paul_HowardPartner in reply to Lily77

Thanks Lily77 :)

Horsewhisper profile image

I’ve just completed it also 👍

Thanks Paul. Done it! 😏

Angie245 profile image

Done :) x

Cas70 profile image

Survey completed ! Thanks Paul

thestorm profile image

Hi Paul, although I live here in the states, would my input matter to help us all? Please let me know, and if so, I will be glad to participate in the survey. peace and blessings, thestorm

Paul_Howard profile image
Paul_HowardPartner in reply to thestorm

Hi thestorm ,

I think that this survey would just be for UK residents. Thank you very much for your offer of support though.

thestorm profile image
thestorm in reply to Paul_Howard

You are very welcome, As I have many of the conditions, I am always looking for ways to share our never ending fight to help all of us. Sad that this one wont, but grateful for this hub, and everyone in it. Be well. peace, healing blessings thestorm

Ncut profile image

I have completed and submitted the survey

kingsnorth profile image

Thanks Paul all done x

Barnclown profile image

🤩 THANKS Paul ❤️🍀❤️👍

Babs511 profile image

Thank you Paul , all done and completed. 💜🙋🏼‍♀️

Cottar profile image

I’ve completed and posted the survey but thought it was very limited. There are so many aspects of how our lives living with disease and the NHS interact that were not covered that I feel a good opportunity has been missed.

in reply to Cottar

I have say, I got the same impression.

Would I believe this would lead to more money pouring into

the NHS for us? Seriously? I filled in, but maybe, by 2050.

I was also shocked to see the "ethnicity" classification.

"Asians" as if they are asking if you got a "brown face".

Surely, there are more specific ethnic groups other than "Asians".

Very colonial, I find.

Completely out of touch.

Wendy39 profile image

Done. Thank you Paul.

Spotty-ewe profile image

Just completed it . Thanks Paul.👍🏻

Lizard28 profile image

Thanks Paul, submitted.

Krazykat26 profile image

Thanks Paul..all done 💜xx

Caramia1964 profile image

completed x

Queenmab profile image

Thank so much. I have been aware of classified conditions of which I have several but not recognised by my health care providers. I have participated and found it clear and simple.

Lizziequink profile image

Hi Paul. Many thanks for telling us about the survey. I've just completed it. Also, thank you and your team for all the support & advice you provide. Regards, Liz

Robin1974 profile image

I have a left sided congenital Arachnoid cyst which has been symptomatic all my life. Depending on the type of machine you either see yellow or that it is open which is very rare winds round my sinuses and ends in a polyp in my nose. I also have Ehlers-Danlos periodontitis type and Lupus with RA and PsA.

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