please read and take action

[DonnaBoll]

In a post from the other day, I shared with you a statement from the PBC Foundation about this crisis with the availability of Ocaliva. Robert has asked everyone to write to particular people to express your concern and dissatisfaction with this decision.

Those who belong to the PBC Foundation can go to their website and easily click on the article and statement from them regarding Ocaliva. pbcfoundation.org/uk

Only with hearing from you can the minds of those making these decisions perhaps be changed.

from The Foundation's statement....."We promise you we are working on this with every resource available to not only overturn this travesty in patient care, but to ensure this is not replicated by other regulators.

If you are interested in supporting this campaign, please email [e-mail] and we shall keep you fully informed of next steps.

If you have not already done so, please add your signature to our first open letter: change.org/Caring_for_PBC"

Yours,

Robert Mitchell-Thain, CEO PBC Foundation

Prof Dave Jones OBE, Chair of PBC Foundation’s Medical Advisory Board

***** UPDATED 1 JULY 2024 *****

Thank you for visiting here and, hopefully, signing our open letter (almost 1500 signatures, so far).

change.org/Caring_for_PBC

The other thing we need you to do is to email the two European Commission Heads with your personal views on OCA and PBC, asking for European Commission not to accept the recommendation of EMA.

Ms Ursula VON DER LEYEN [e-mail] Tel. [phone]

Mr Bjoern SEIBERT Head of Cabinet of the President [e-mail] Tel. [phone]

We have been informed that this is one of the most powerful tools the patient community has, and number of emails, irrespective of how well written or how basic, has a role to play.

So please… for the patients who so vitally need OCA in the toolbox of clinicians treating PBC, especially high-risk patients, can you send these people an email?

Feel free to copy me, [e-mail] in also.

Thank you.

Robert

***** UPDATED 2 JULY 2024 *****

Please click HERE to review our open letter in response to the European Reference Networks (ERN) statement

rare-liver.eu/news/detail/o...

[Turquoise2075]

Thank you Donna, This does concern me as Ocaliva has noticeably helped me, especially with cognitive function and fatigue issues. I was a non-responder to Urso and Fenofibrate made me very ill, so neither of those options can help me. I will look at the various options for action mentioned and contribute what I can.

[DonnaBoll Administrator in reply to Turquoise2075]

I know how passionate The PBC Foundation is about changing this. They appreciate every signature and letter sent. Your voices need to be heard for sure.