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To draw your attention to 28th Feburary 2014 being rare disease day? or in asking you to join in the thunderclap?

(39 Posts)
KarenBrockman Thu 20-Feb-14 20:05:00

www.rarediseaseday.org/article/what-is-rare-disease-day

KarenBrockman Thu 20-Feb-14 20:09:20

https://www.thunderclap.it/projects/8543-rare-disease-day-2014-feb-28

KarenBrockman Thu 20-Feb-14 20:22:51

Bumping, in the hope someone will want to support!

KarenBrockman Thu 20-Feb-14 20:51:32

Anyone?

eve34 Thu 20-Feb-14 21:14:54

Thank you :-)

pudseypie Thu 20-Feb-14 21:53:58

Yes I knew about it as my ds has a rare disease and one of the charities we follow for advice is also promoting it.
Hope more people become aware.

BitchyHen Thu 20-Feb-14 22:15:29

I have heard about it as have IIH which is a rare disease. It has been promoted on IIH support's Facebook page. I will be sharing my experience with friends on Facebook to help raise awareness, and I hope others will too.

mineofuselessinformation Thu 20-Feb-14 22:25:38

Done. One of my dcs has a rare disease (1 in 150000) - no testing currently available and another with a genetic condition (1 in 120000) - testing available but only for research purposes.

ricericebaby Thu 20-Feb-14 22:37:46

Supported. Have DD with 2 rare chromosome disorders.

KarenBrockman Thu 20-Feb-14 22:41:36

I like this gathering together. I will be raising my hand on 28th!

It is a shame that there are not many non rare medical condition people joining in so far.

KarenBrockman Thu 20-Feb-14 22:57:15

Have any of you emailed or written to your MP to ask them to attend The Rare Disease Day 2014 reception? It takes place in the Terrace Marquee, Westminster on Wednesday 26th February between 4:00pm and 6:00pm.

KarenBrockman Fri 21-Feb-14 11:59:50

bump

CFSKate Fri 21-Feb-14 12:04:18

I have often thought that the only positive in having ME is that at least there are quite a lot of us. It must be very hard to have something so rare that no-one is even researching it.

KarenBrockman Fri 21-Feb-14 12:59:40

Just giving another little lunch time bump.

daisychain01 Fri 21-Feb-14 13:05:53

Karen, just to say my organisation is making significant progress investing resources and expertise into understanding more about Rare Diseases, and Im proud to be employed by them for that very reason.

RD is such a complex domain not least of all because there are obviously limited populations for clinical trials, which is a regulatory obligation before being able to launch therapies to market. But we are persevering!

Mogz Fri 21-Feb-14 13:25:15

Thanks for posting this, I had no idea about it but will now share the links with friends and family.

KarenBrockman Fri 21-Feb-14 19:13:34

A little evening bump!

nf1morethanjustlumpsandbumps Fri 21-Feb-14 21:52:31

Have taken part on Facebook. Both DS and my son have NF.

nf1morethanjustlumpsandbumps Fri 21-Feb-14 21:52:59

And myself obviously

KarenBrockman Sat 22-Feb-14 12:39:25

Lunch time bump!

SidandAndyssextoy Sat 22-Feb-14 12:41:47

I'll support. Another person with family members with a rare disease. It's a huge struggle to have to deal not only with I'll health but also a lack of understanding, even from many medical professionals.

Punkatheart Sat 22-Feb-14 12:49:34

Mine is rare - 1 in 1,000,000 apparently. Good wishes to all others here.

KarenBrockman Sat 22-Feb-14 19:49:41

Evening bump!

KarenBrockman Sun 23-Feb-14 23:38:00

bump

Grennie Mon 24-Feb-14 01:04:52

My DP has an extremely rare genetic disease. It seems to have skipped all of DP's immediate family though. When DP was in hospital for an operation for it, a young Dr bounded up excited to meet DP as she had read about the condition, but never met anyone with it. GP's have usually never heard of it.

I have a fairly rare illness as well, but positively common compared to DP.

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