Ataxia and Other Rare Disease Events

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.

It’s back in person! RAREfest22 25th & 26th November at the Guildhall, Cambridge An award-winning festival that is as UNIQUE as the people it champions. Featuring the brightest minds in research, the innovators of life-changing technologies, the pioneers in treatments, and the patients whose powerful voices must be heard. Join us live and in person in the heart of historic Cambridge for RAREfest22, a public-facing, rare disease inspired festival featuring interactive talks, demos and exhibits, film and art showcasing innovative science, visionary technology and pioneering organisations improving lives and bringing hope to those living with rare conditions, those who love them and care for them. Over the coming weeks, we’ll be in touch a little more than usual to share news from the RAREfest22 back room. Sharing stories and updates as they happen. Keep your eyes peeled and meet those taking part. #RareFest22

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

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 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.

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.

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.

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.

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.

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.