CoufeteryComms

On day 3 of the rare disease awareness initiative, I would like to introduce you to Mabel. Now, Mabel and I go way back. She was at nursery with my son Malakai. She was the happiest baby I have EVER met. Mabel has Williams Syndrome. heathermason803.wixsite.com/mysite/post/i-…

Day 2 of the Rare Disease Awareness Initiative. We are Amelia and Ollie. We have Batten Disease. Read my blog for their story of diagnosis, fight for treatment, and living with a devastating neurological disease. heathermason803.wixsite.com/mysite/science…

First day of my initiative raising awareness of one different rare disease every day during February. von Willebrand disease awareness day. Affecting around 1% of the population, often undiagnosed, so do you bleed easily? More information on my blog. heathermason803.wixsite.com/mysite/science…

Proud to have contributed to these new patient education leaflets, published by the National Hemophilia Foundation for Factor V deficiency and Platelet Storage Pool Deficiency. hemophilia.org/sites/default/… hemophilia.org/sites/default/… #raredisease @NHF_Hemophilia

One in seventeen people have a rare disease, and yet over half of physicians surveyed by Medscape Education, say they had never, or only once a year seen a patient with a rare disease. 🤔 @FymcaMedical @M4RareDiseases #RareDiseaseDay2023 univadis.com/viewarticle/ad…

@DSAInfo @hm @DSWorkFit @BenPBradshaw Fabulous to hear this. Well done Olivia.

Olivia has worked at @hm Exeter over 6 months & is doing really well. Her work buddy says she is 'a joy to work with & her confidence has grown over the last few months.' Many congrat's Olivia 🙌 & thanks to H&M for supporting Olivia & our @DSWorkFit programme @BenPBradshaw

No-one who arrives on our shores having fled war, persecution or violence should be treated like a criminal.

@EHC_Haemophilia You first @FRobinsonPhD 😂

Singing (even badly!) is a great, fun strategy for learning! 
Sing together with us to remember the details of the #TherapeuticAntibodies topic in the #EHCucate app. Bispecific, humanised, monoclonal antibodies. Come on! Sing it, everybody!

A client has asked me to cover an oncology conference (virtually) from tomorrow, until Tuesday. I have an assignment letter but no contract, no brief, and no response to my emails since Monday. Would you still attend the conference? Find another interested outlet?

The most arresting, sensible and compassionate 4 minute speech. Please please watch it and share.

Exciting new content in the @EHC_Haemophilia novel therapies education app. Download for free (iOS or Android) and learn all about Therapeutic Antibodies!

@suchisaria Very interesting and thought provoking presentation. Thank you Suchia. I hope that these systems will continue to improve and receive the recognition they deserve. #ECCMID2022

About to do a live video interview. It’s for a massive clinical meeting (15k+ attendees). Lost track of time and got out of bed 5 mins prior to the interview! I’m here - before the interviewer is ready for me. Phew!!!!

#ECCMID2022 starts tomorrow! It has been a long road but we are happy to present the first ever hybrid #ECCMID. Whether we see you in person or online, it will be our pleasure to welcome you again! Doors open at 7:30 WEST and sessions start at 8:30 WEST! eccmid.org

@DSWorkFit @DSAInfo @BandQ Fabulous well done James and best of luck

We love this video clip that James recorded telling recently us why he'd like to work at @BandQ and we just wanted to share with you the fantastic news that he starts his new job at @BandQ Hedge End next week. Woohoo! Huge thanks to Linda and the store team. Go James!

It's in press! Highest rated guidelines published for a rare disease! Very proud to announce the publication of guidelines for CLN2 disease. Earlier diagnosis; coordinated, informed, multidisciplinary care. #RareDisease #Awareness #guidelines ojrd.biomedcentral.com/articles/10.11…

Experts estimate that 5000 to 10000 people have Pompe disease worldwide. April 15, 2021 is the 8th International Pompe Day! #pompe #rarediseaseeducation #rarediseaseawareness #fymcamedicalltd #togetherwearestrong

Vaccination with the Pfizer or Moderna vaccine reduces infections by 90%, while a single dose confers 80% protection, shows a study led by the US @CDCgov that followed essential workers through the worst months of the pandemic ow.ly/zLAX50EeHRr

I'm looking forward to attending the online Pompe Masterclass hosted by @FymcaMedical on 6-7 May. #raredisease #pompe #rarediseaseawareness #medicaleducation Who else is coming? Click the link below to register. hopin.com/events/pompe-m…

Another interesting online event will be hosted by @FymcaMedical The Fundamentals of Tyrosinemia, 10 April 2021. #inbornerrorsofmetabolism #rarediseases #rarediseaseawareness #Tyrosinemia #medicaleducation Click on the link to register: hopin.com/events/the-fun…