This post has been updated on 30/11/2020, with details of the finalised survey, which is now available to complete.
Thyroid Federation International (TFI) and four leading international endocrinologists (Petros Perros- UK, Laszlo Hegedus - Denmark, Enrico Papini - Italy, and Endre Nagy- Hungary) have come together to develop and implement an online questionnaire to understand the needs and experiences of those living with hypothyroidism and, in particular, patients' satisfaction with treatment of hypothyroidism and the identification of any unmet patient needs. (Please see the Research Aims and how to get involved at the bottom of this post).
MSP Elaine Smith who has been a tireless advocate for thyroid patients and is a patient herself, has kindly put a motion to the Scottish Parliament, for International Thyroid Awareness Day 2020, 25th May.
We have published a statement today on the impact of Covid-19 on people with thyroid disorders.
One foot in the Graves’
Imagine waking up one day to realise you no longer recognise yourself in the mirror, your relationships are falling apart, you feel strange pains throughout your body and you feel a deep, heavy emptiness in your chest that nothing will shift.
If you’re someone who has thyroid eye disease, you’ll know exactly what I mean. If you’re someone that knows someone that’s had it, you might know what I mean, but if you’re neither, the chances are you won’t.
And that’s understandable, as it’s a rare disease.
The Thyroid Trust and our friends at Thyroid UK are cosignatories to an important statement by the voluntary sector that has been issued this morning calling for a more sophisticated and meaningful debate on health in the UK.
Leading clinicians from across the world are coming together for a Joint Symposium on evidence based use of T3+T4 combinations for treating hypothyroidism.
The event will take place on Sunday 3rd November 2019, in both London and Chicago, with participants in both locations sharing information and debate.
It has been jointly organised by the American Thyroid Association® (ATA®), the British Thyroid Association (BTA) and the European Thyroid Association (ETA).
The Thyroid Trust is a member of Thyroid Cancer Alliance which gives us access to WECAN, the Workgroup of European Cancer Patient Advocacy Networks. Earlier this year we were fortunate to be able to send a representative to the WECAN Academy in Frankfurt. You can read our report of the course, on an earlier blog post, here.
WECAN is now planning its first WECAN Science Academy in early 2020 with three aims:
Have you thought of asking your employer, or other companies you may have connections with, if they might be able to support The Thyroid Trust?
Lots of companies are keen to support charities and they are often all the more keen if a staff member or customer suggests it to them.
We have been incredibly fortunate to be offered use of meeting room space by Transport for London,
The Thyroid Trust is for people affected by all thyroid disorders, which includes thyroid cancers.
Our Director, Lorraine Williams, attended the first WECAN Academy, 6th-9th July 2019 in Frankfurt, along with our Chair of Trustees, Judith Taylor, who is also Secretary and Director to Thyroid Cancer Alliance and a member of the WECAN organising committee. Lorraine was sponsored by the umbrella organisation, Thyroid Cancer Alliance, which we are members of.
World Thyroid Day is May 25th, and International Thyroid Awareness Week is
May 25th to 31st, 2019.
This blog is by members of Thyroid Trust Friends Network who have signed up to our Ground Rules and blogging guidelines. Please get in touch if you'd like to write something for possible publication on our site.