Ataxia and Other Rare Disease Events

Coronavirus has limited our ability to deliver face to face content to you but it does not stop us from delivering you the the best possible information we could through zoom meetings and podcasts, we have covered it all for you. Stay connected to get all the latest updates on Ataxia and other rare diseases.

Patient Solidarity Day 6th-7th Dec

Each year during December the International Alliance of Patients (IAOP) gather together to promote patient-centred healthcare around the world. Their vision is to see patients placed at the centre of healthcare. You can get involved by becoming an IAPO member, joining the global patient conversation on Twitter, Facebook, Youtube and Linkedin, or by signing up for their monthly newsletter.

Cambridge Rare disease network 28th Nov

This event which takes place on Nov 28th each year brings together patients, organisations, clinicians and researchers with the aim of increasing people’s knowledge about the large range of rare diseases. In 2020, the event is virtual and is free to attend.

22Q Syndrome Awareness Day 22nd Nov

22Q is a rare genetic disorder caused by a missing section of chromosome 22. November is the awareness month for this condition. You can get involved by donating or sharing your own story about life with 22Q on social media and use a 22Q personalised frame on your Facebook profile. Click for more details

Acromegaly Awareness Day 1st Nov

Acromegaly is a hormonal disorder which is caused by a non-cancerous tumour on the pituitary gland that causes an excess of growth hormone in the body. You can contribute to the awareness day by encouraging people with symptoms to seek medical advice to help increase early diagnosis.

Stiff Person Syndrome Awareness Day 24th Oct

This is a rare auto-immune condition which varies in the age of onset and is most commonly found in individuals with one or more pre-existing auto-immune conditions. People with this condition commonly experience rigidity in their muscles as well as spasms. The official awareness day for this condition is 24th October.

World mental health day 10th Oct

Celebrated internationally, the 10th Oct marks a day to promote good mental health and to explore issues leading to poor mental health and mental health disorders. Each year a different mental health topic is addressed and explored. You can get involved by making a donation or becoming a member.

Fragile X syndrome awareness day 10th Oct

A rare genetic condition that affects the X chromosome and can result in various learning disabilities. 10th Oct is the awareness day for fragile X in Spain and Ireland. To find out how you can help raise awareness, see more details.

PANS and PANDAS awareness day 9th Oct

This abbreviation stands for Paediatric Acute-onset Neuropsychiatric Syndrome which is a neuro-psychiatric condition that causes the brain to become inflamed. It is a condition that is found in children caused by an immune response. The 9th of October is the official international awareness day for this condition but there are many events held to mark this condition throughout the year.

MCT8 deficiency Awareness Day 8th Oct

This is a genetic condition that only affects males. It can cause problems with brains development and result in learning disabilities. October 8th is the awareness day for MCT8 in Greece. Click to find out more.

Aarskog Syndrome Awareness Day 29th Sep

This is a rare genetic condition that results in various facial and body abnormalities. 29th September in the UK is the official awareness day for the syndrome. To find out how you can get involved and make a difference click for more details.

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