There’s a superstition in oncology that the worst things happen to the nicest patients In truth I think it reflects even our misplaced sensibility that virtue should confer good health But it doesn’t, and in fact our fleeting lives are all the more reason to be considerate

On this World Cancer Day we'd like to celebrate all the small (yet mighty!) organisations who work tirelessly to support those with rare and uncommon cancers. We are honoured to work with you! Neuroendocrine Cancer UK #NotJustNECancer AMEND Cancer52 #WorldCancerDay

Excellent clinical trials design discussion: we must address impact on QofL (Quality of Life) alongside survival - including design to avoid financial, not just physical, toxicity - what matters to patients Simron Singh / John Ramage #ENETs2021 NeuroEndoTalk

It's Rare Disease Day! After the past year, this Rare Disease Day feels more important than ever before. So if you have a rare disease, or support the rare disease community in any way, today is for you.

This book’s quote an oldie now , but a still a goodie .. The title alone means I often reach for its words of wisdom !

To start #MentalHealthAwarenessWeek, spend 20 minutes having a conversation about mental health with your child. Here are some conversation starters you can use.

'Healthcare professionals should be provided with the skills, knowledge and capacity to demonstrate awareness of the emotional challenges of living with a rare disease.' Read our other recommendations 👇 ow.ly/TNFE50EJFR3 #MHAW #MentalHealthAwarenessWeek

'Coordinated rare disease services should include assessment of mental health needs and access to mental health services. This should be extended to carers.' Read more in our report here 👉 ow.ly/BR5o50EJH6n #MHAW #MentalHealthAwarenessWeek

Evidence has continued to confirm the widespread impact COVID-19 is having on mental health. Increasing access to psychotherapy through a choice of talking therapies in the NHS is vital to addressing this increasing need: ow.ly/CKaW50EKJsS #Covid19 #Psychotherapy

Have your say! #30millionreasons

📢 Please click to help Genetic Alliance UK, the charity that runs Rare Disease UK win £1,000 from Ecclesiastical movementforgood.com/index.php?cn=1…

Have heard too many experiences over the years of no, poor or inadequate provision for families and individuals - especially in ‘ atypical’ situations such as the impact of rare conditions theguardian.com/commentisfree/…

Agreed . Psychotherapy is quite literally a relationship between human beings - AI ‘Psychotherapy’ is something else entirely

Had a great time talking with colleagues Debra Regier Amy Hunter Genetic Alliance UK and Dr. Kathleen Bogart 🦓 about Psychological Impact of RD’s. thanks so much to Fondation Ipsen - Rare but not Alone and Science Magazine for raising awareness of this key area of living with #rarediseases.Do have a listen!

‘Suffering has become normalised in Britain. We can do better than this’. Agreed . theguardian.com/commentisfree/…

The wonderfully talented writer and artist Mr. John Curtis created an infographic summary of my book, "Reclaiming Conversation: The Power of Talk in a Digital Age.” I have already framed it, sent it to my daughter and my editor!

Anyone else been feeling ‘out of sorts’ in all the windy weather lately? Turns out an ‘Ill wind really does blow no good…! ‘ Brief Eerie History of How the Wind Makes Us Crazy ‹ Literary Hub lithub.com/a-brief-eerie-…

So proud of my teams commitment to their work with clients impacted by #raredisease

I love sci fi generally😊, but anyone else excited that rare genetic conditions just got a storyline in Star Trek’s ‘Picard’ , with Jean-Luc and son Jack coming to terms with the emotional impact of inheritance? Ok , it’s a made up one called Irumodic Syndrome , but still..😁

Useful wider relevance on information-sharing and #coping to caregivers of children impacted by #RareDisease #skin conditions