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.

Two Disabled Dudes Podcast

Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However, both dudes have completed several long distance bike rides including “The World’s Toughest Bike Race” - Race Across America (RAAM).  Their RAAM journey is the subject of an award winning documentary called The Ataxian.

International Metabolic Disorders Awareness Week 6th-12th July

From 6th-12th July patients charities and members of the public will be taking part in a series of activities to raise awareness of metabolic disorders via social media platforms and donations. See more details for the range of ways you can get involved.

Acute Necrotizing Encephalopathy (ANE) 31st July

ANE is a brain condition that can develop after a person has been infected with a virus or due to a brain injury. July 31st is the awareness day celebrated in Canada and Australia. #ANE

Auto-inflammatory Awareness Month: August

In the UK August is the official month for raising awareness of all auto-inflammatory diseases including rheumatoid arthritis, and inflammatory bowel disease. Click to find more details. #AutoinflammatoryAwareness #Autoinflammatory

Jeans for Genes 14th-20th Sep

Every year between 14th and 20th of September, this charity holds a fundraising event to help support children with genetic disorders in the UK. Funds raised goes towards grants for genetic projects. Click to find out more. #GenesForGenes #UK

 World Patient Safety Day 17th Sep

To participate in this day, you can share your story regarding your own experience of health services, medicines and health devices in preparation for the 17th September. We are looking for stories from patients and carers on safety issues, particularly cases related to infections, resistant bacterial infections, sepsis and medication errors that you may have experienced. If you would like to share your story, click the heading.

 Pitt-Hopkins syndrome 18th Sep

Pitt-Hopkins is a rare genetic condition that affects around 1 in 4 million people. More information about this condition and a link to awareness events occuring on the 18th September can be found here.

 International Ataxia Awareness Day 25th Sep

Sep 25th marks international ataxia awareness day where individuals and organisations coordinate their efforts to increase awareness of this rare disease. You can get involved by organising or joining an event. More details can be found here. #IAAD #Ataxia

 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.

 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.

 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.

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.

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.

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.

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.

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

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.

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.

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