Posts - MPN Voice | HealthUnlocked

Partner•2 months ago

Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began...

Myelofibrosis - GVHD - graft, versus, host, disease

Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old an...

FreemanSaviors

•5 months ago

Hello everyone, I was wondering if anyone is going to the MPN Forum in London on Saturday 18th November? I am excited to go again in person and meet others...

London MPN Forum

Hello everyone, I was wondering if anyone is going to the MPN Forum in London on...

Gaithersburg

•1 year ago

9 Replies

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Polycythemia Vera Leg Cramps

I have PV for last 2 years and on Daily Multiple Hydroxycarbamide. Last 6 weeks get Leg Cramps in bed every night. Amy advice please as next Consultant Appt...

I have PV for last 2 years and on Daily Multiple Hydroxycarbamide. Last 6 weeks ...

Paraic2021

•1 year ago

35 Replies

Video of the MPN Voice ‘virtual’ forum focussing on PV, held on Thu 27 Jul 2023

This ‘virtual’ forum focussed on Polycythaemia Vera (PV) and features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Anna Godfrey, Cambridge...

This ‘virtual’ forum focussed on Polycythaemia Vera (PV) and features talks from...

This in-person forum was held in Galway, Ireland on Sat 24 June 2023, with MPN patients and family/friends attending from across Ireland. Programme...

Partner•1 year ago

4 Replies

Video of the MPN Voice patients’ in-person forum Galway, Sat 24 June 2023

This in-person forum was held in Galway, Ireland on Sat 24 June 2023, with MPN p...

Partner•1 year ago

Tuesday 7 November, 1 - 5 pm (arrival/registration from 1pm with complimentary buffet lunch) Venue Thackray Museum of Medicine 141 Beckett Street...

MPN Voice Patients’ Forum – Leeds, Rotherham, Sheffield teams combined

Tuesday 7 November, 1 - 5 pm (arrival/registration from 1pm with complimentary b...

Partner•1 year ago

Friday 21 July, 4 - 8 pm (arrival/registration from 4 pm with complimentary light buffet) Venue Future Inn Bristol Bond Street South Bristol BS1 3EN...

MPN Voice Patients’ Forum – Gloucester & S Wales teams combined

Friday 21 July, 4 - 8 pm (arrival/registration from 4 pm with complimentary ligh...

Partner•1 year ago

Monday 17 July 2023, 1 – 5 pm (arrival/registration from 1 pm with complimentary buffet lunch) Venue Mercure Nottingham Sherwood Hotel 296 Mansfield...

MPN Voice Patients’ Forum – Nottingham & Birmingham teams combined

Monday 17 July 2023, 1 – 5 pm (arrival/registration from 1 pm with complimentary...

Partner•1 year ago

This MPN Voice ‘virtual’ forum will focus on Genetics and MPNs, with presentations from: Dr Anna Godfrey, Cambridge University Hospitals NHS FT; Dr Jonathan...

MPN Voice ‘virtual’ forum – Genetics and MPNs Thu 25 May 2023, 5 – 6.30 pm (BST)

This MPN Voice ‘virtual’ forum will focus on Genetics and MPNs, with presentatio...

Partner•2 years ago

This will be the 7th Living with MPNs Day that MPN Voice has hosted, it is an all-day event held in London, for MPN patients, their family, friends and carers...

Save the date: MPN Voice Living with MPNs Day 2023 - Saturday 18th November

This will be the 7th Living with MPNs Day that MPN Voice has hosted, it is an al...

Partner•2 years ago

1.30 pm – 5 pm (arrival/registration from 1 pm with buffet lunch) Venue: The Royal Station Hotel, Neville Street, Newcastle-upon-Tyne NE1 5DH THIS IS AN...

MPN Voice Patients’ Forum – Newcastle-upon-Tyne Friday 13 October 2023

1.30 pm – 5 pm (arrival/registration from 1 pm with buffet lunch) Venue: The Ro...

Partner•2 years ago

1.00 pm – 5 pm (arrival/registration from 1 pm with buffet lunch) Venue: The Imperial Hotel, Vaughan Street, The Promenade, Llandudno LL30 1AP THIS IS AN...

MPN Voice Patients’ Forum in-person – Llandudno Friday 22 September 2023

1.00 pm – 5 pm (arrival/registration from 1 pm with buffet lunch) Venue: The Im...

Partner•2 years ago

10.00 am – 4.30 pm (arrival/registration from 10 am with tea/coffee/pastries) The Galway Bay Hotel, The Promenade, Salthill, Galway H91 W295 THIS IS AN...

MPN Voice patients’ forum – Galway Saturday 24 June

10.00 am – 4.30 pm (arrival/registration from 10 am with tea/coffee/pastries) T...

Partner•2 years ago

This online forum focused on Menopause, HRT and MPNs, with guest speaker Debra Holloway, Nurse Consultant Gynaecology, Guy’s & St Thomas’ NHS Foundation Trust....

video of the MPN Voice patients’ virtual forum, London, 12 Jan 23 – Menopause, HRT and MPNs - now available to view

This online forum focused on Menopause, HRT and MPNs, with guest speaker Debra H...

Partner•2 years ago

This online forum focussing on ET – featured talks from: Dr Anna Godfrey, Cambridge University Hospitals; Prof Mary Frances McMullin, Queen’s University...

The video of the MPN Voice patients’ ‘virtual’ forum, held on Wed 7 Sep 2022, is now available to view.

This online forum focussing on ET – featured talks from: Dr Anna Godfrey, Cambri...

Partner•2 years ago

This will be the 6th Living with MPNs Day that MPN Voice has hosted, it is an all-day event held in London, for MPN patients, their family and friends to hear...

The MPN Voice Living with MPNs Day – Saturday 5th November 2022 REGISTRATION NOW OPEN!

This will be the 6th Living with MPNs Day that MPN Voice has hosted, it is an al...

Partner•2 years ago

I had mild shingles (not bad blisters) as I'd had the injection but much pain in my teeth. But following the acyclovir course and things subsided the pain in...

Post Shingles Pain

I had mild shingles (not bad blisters) as I'd had the injection but much pain in...

omits

•2 years ago

8 Replies

Save the Dates for 3 MPN Voice in-person patients’ forums

We are very pleased to announce that we will be holding 3 in-person patients’ forums in the coming months, full details will be announced shortly, but in the...

We are very pleased to announce that we will be holding 3 in-person patients’ fo...

Partner•2 years ago

This MPN Voice ‘virtual’ forum will feature talks from: Dr Anna Godfrey, Dr Joanne Ewing, Professor Mary Frances McMullin and Professor Claire Harrison....

MPN Voice ‘virtual’ forum, Wed 7th September 2022, 4.30 – 6.15 pm (16:30 – 18:15) BST

This MPN Voice ‘virtual’ forum will feature talks from: Dr Anna Godfrey, Dr Joa...

Partner•2 years ago

This online forum – Symptom Management - featured talks from: Claire Woodley, Advanced Nurse Practitioner, Guy’s & St Thomas’ Hospital (GSTT) and Lauren Urwin,...

Video of the MPN Voice patients’ virtual forum, 11 July 2022

This online forum – Symptom Management - featured talks from: Claire Woodley, Ad...

Partner•2 years ago

This online forum will feature talks from: Claire Woodley, Advanced Nurse Practitioner, Guy’s & St Thomas’ Hospital (GSTT) and Lauren Urwin, Specialist...

MPN Voice ‘virtual’ forum – Mon 11th July 2022, 4.30 – 6.15 pm (16:30 – 18:15) BST

This online forum will feature talks from: Claire Woodley, Advanced Nurse Practi...

Partner•2 years ago

Long trips with Besremi. What do you use to have in temperatura this medication? Thanks

Traveling with Besremi

Long trips with Besremi. What do you use to have in temperatura this medication?...

SoledadBarcelona

•2 years ago

13 Replies

Living with PV

Hi I'm new here and I've just been diagnosed with PV and taking hydroxycarbamide, 1 tablet per day 2 at weekends along with allopurinol for the gout symptoms...

Hi I'm new here and I've just been diagnosed with PV and taking hydroxycarbamid...

Swim360

•2 years ago

11 Replies

Video of the MPN Voice patients’ in-person forum Cork, Sat 21 May 2022

This was the first in-person forum MPN Voice has held since the end of 2019, it was very well attended by MPN patients, with their families and friends, from...

This was the first in-person forum MPN Voice has held since the end of 2019, it ...

Partner•2 years ago

PEN (Patient Empowerment Network) is hosting a MPN webinar entitled “Clinical Trials as an MPN Treatment Option: What You Should Know.” Watch online on...

A webinar with the Patient Empowerment Network - Clinical Trials as an MPN Treatment Option: What You Should Know

PEN (Patient Empowerment Network) is hosting a MPN webinar entitled “Clinical Tr...

Partner•3 years ago