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PBC Foundation

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All posts for February 2025

It's Rare Disease Day!

I think for myself I sometimes even forget I have what is considered a 'rare' disease. Since I have been dealing with this in some way of another since...

I think for myself I sometimes even forget I have what is considered a 'rare' di...

DonnaBoll

Administrator•2 months ago

2 Replies

Glucosamine/Chondroitin

Hello everyone. I was diagnosed with PBC almost 3 years ago now. I'm on Urso, and my ALP and other liver enzymes are now all in the normal ranges. While I...

Hello everyone. I was diagnosed with PBC almost 3 years ago now. I'm on Urso, an...

lovesoccer

•2 months ago

7 Replies

regarding rare diseases...

More than 90% of rare diseases do not have FDA-approved treatments. The majority of rare diseases begin in childhood. Approximately 30% of children with rare...

More than 90% of rare diseases do not have FDA-approved treatments. The majori...

DonnaBoll

Administrator•2 months ago

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Want to take advantage of all our features? Just log in!

Take advantage of this...

Don't forget that our next #pbc Q&A is tomorrow at 2pm (UK time) when Prof David Jones will be answering your questions. If you have any questions, please...

Don't forget that our next #pbc Q&A is tomorrow at 2pm (UK time) when Prof David...

DonnaBoll

Administrator•2 months ago

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Rare Diseases

Rare diseases are conditions that affect fewer than 1 in 200,000 people. Here are some examples: Genetic Disorders: Cystic fibrosis, Huntington's disease,...

Rare diseases are conditions that affect fewer than 1 in 200,000 people. Here ar...

DonnaBoll

Administrator•2 months ago

2 Replies

Evening primrose

Hi just wondered does anyone know can we take evening primrose oil. Having non cyclical breast pain atm . Have had all checked and OK but can't get rid of the...

Hi just wondered does anyone know can we take evening primrose oil. Having non ...

Casslucy

•2 months ago

6 Replies

vitamins

good evening, I was just wanting too see if anybody recommends takeing any vitamins with pbc? I no that you can get low vitamins levels and I have just asked...

good evening, I was just wanting too see if anybody recommends takeing any vitam...

Lena2011

•2 months ago

7 Replies

amazing organization..

National Organization for Rare Disorders NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best...

National Organization for Rare Disorders NORD advances practical, meaningful, a...

DonnaBoll

Administrator•2 months ago

1 Reply

RSV jab

My computer has not been showing Health unlocked for a while so I am not aware if this issue has already been discussed. Apologies if it has. I am 84 , 80 is...

My computer has not been showing Health unlocked for a while so I am not aware i...

Oidra

•2 months ago

3 Replies

Friday is Rare Disease Day

All this week I want to share some facts The exact number of rare diseases is unknown, but estimates vary widely. According to the National Institutes of...

All this week I want to share some facts The exact number of rare diseases is u...

DonnaBoll

Administrator•2 months ago

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Livdelzi

Is anyone else taking Livdelzi?

gwillistexas

•2 months ago

17 Replies

Rare Disease Day is coming up....

In the lead up to #RareDiseaseDay on Friday, you will be hearing from the PBC Foundation team this week about why they are supporting rare disease day. Today,...

In the lead up to #RareDiseaseDay on Friday, you will be hearing from the PBC Fo...

DonnaBoll

Administrator•2 months ago

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just so you know...

Following our announcement earlier in the week about the addition of more Community Café online and face to face meetings to our events calendar, here are the...

Following our announcement earlier in the week about the addition of more Commun...

DonnaBoll

Administrator•2 months ago

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always remember...

I think this goes perfectly with The PBC Foundation's theme of "more than you can imagine" for Rare Disease Day, February 28th.

I think this goes perfectly with The PBC Foundation's theme of "more than you ca...

DonnaBoll

Administrator•2 months ago

1 Reply

love this!

I want this group to always be somewhere that anyone can 'vent'. We all understand.

I want this group to always be somewhere that anyone can 'vent'. We all understa...

DonnaBoll

Administrator•2 months ago

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Friday Fun Question

What is it about a certain color that makes it your favorite? Mine is yellow. I find it soothing - almost hopeful.

What is it about a certain color that makes it your favorite? Mine is yellow. I...

DonnaBoll

Administrator•2 months ago

4 Replies

Thursday's Thoughts

Hard to believe that today is already February 20. As I get older (soon to be 75!) the years really seem to fly by. I look around and another month is...

Hard to believe that today is already February 20. As I get older (soon to be 7...

DonnaBoll

Administrator•2 months ago

2 Replies

some perspective...

This certainly gives us an idea of how many deal with rare diseases every single day.

This certainly gives us an idea of how many deal with rare diseases every single...

DonnaBoll

Administrator•2 months ago

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Wednesday's Word

senescence This refers to one of the ways that the cells that line the bile ducts ( biliary epithelial cells) respond to injury....

senescence This refers to one of the ways that the cells that line the bile duc...

DonnaBoll

Administrator•2 months ago

1 Reply

Great opportunity... submit your questions

Don't forget that Dr George Mells will be answering your #pbc questions from 2pm (UK time) tomorrow. If you have any questions, please submit them by using...

Don't forget that Dr George Mells will be answering your #pbc questions from 2pm...

DonnaBoll

Administrator•2 months ago

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Tuesday's Tip

Cholesterol levels are frequently found to be elevated in patients who have PBC. This can be very unsettling as they feel it's 'one more thing'...

Cholesterol levels are frequently found to be elevated in patients who have PBC....

DonnaBoll

Administrator•2 months ago

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love the slogan... so true

#RareDiseaseDay is on 28th February next week, and this week we are sharing information that highlights this year's Rare Disease Day slogan 'More than you can...

#RareDiseaseDay is on 28th February next week, and this week we are sharing info...

DonnaBoll

Administrator•2 months ago

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take advantage of this...

Dr George Mells will be answering your #pbc questions from 2pm (UK time) on Thursday this week. If you have any questions, please submit them by using the...

Dr George Mells will be answering your #pbc questions from 2pm (UK time) on Thur...

DonnaBoll

Administrator•2 months ago

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self care session...

Our next Choose Me Tuesday self-care session is tomorrow at 6pm UK time. The theme this week is: movement is medicine. Login is required to keep this a safe...

Our next Choose Me Tuesday self-care session is tomorrow at 6pm UK time. The th...

DonnaBoll

Administrator•2 months ago

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It's Monday Me!

I know in the past week there have some very poignant posts - acknowledging the fact that we are no longer the same person before PBC, that we can feel...

I know in the past week there have some very poignant posts - acknowledging the ...

DonnaBoll

Administrator•2 months ago

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a reminder....

There will be an online Community Café taking place this evening from 7-7.45pm Log-in is required to keep this a safe space. If you are already registered...

There will be an online Community Café taking place this evening from 7-7.45pm ...

DonnaBoll

Administrator•2 months ago

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Worst days of my life

I’m not sure why and I guess it doesn’t matter but the last few days I was wishing I would fall asleep and not wake up. I’m sure I’m not the only one that...

I’m not sure why and I guess it doesn’t matter but the last few days I was wishi...

Gabe61

•2 months ago

13 Replies

improved Fibroscan

hi guys has anybody had their Fibroscan scores improved after taking urso? eleni

hi guys has anybody had their Fibroscan scores improved after taking urso? ...

Elkol

•2 months ago

5 Replies

Friday Fun Question

Looking back, what would you tell your '18 year old self' today?

DonnaBoll

Administrator•2 months ago

5 Replies

Thursday Thoughts

When I got up this morning - and not sleeping well lately (I know some of you can relate) the fatigue was awful. Just showering was an effort.... walking...

When I got up this morning - and not sleeping well lately (I know some of you ca...

DonnaBoll

Administrator•2 months ago

9 Replies

Posts - PBC Foundation | HealthUnlocked

PBC Foundation

All posts for February 2025

It's Rare Disease Day!

Glucosamine/Chondroitin

regarding rare diseases...

Take advantage of this...

Rare Diseases

Evening primrose

vitamins

amazing organization..

RSV jab

Friday is Rare Disease Day

Livdelzi

Rare Disease Day is coming up....

just so you know...

always remember...

love this!

Friday Fun Question

Thursday's Thoughts

some perspective...

Wednesday's Word

Great opportunity... submit your questions

Tuesday's Tip

love the slogan... so true

take advantage of this...

self care session...

It's Monday Me!

a reminder....

Worst days of my life

improved Fibroscan

Friday Fun Question

Thursday Thoughts

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