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 WEEK 27-30 September (2021)

PMF PATIENT WEEK ONLINE AGAIN IN SEPTEMBER 2021 Precision Medicine Forum – Patient Week is designed with the patient at the very forefront of the discussions. Held virtually and free to attend for patients and advocates, this is the first event in our ongoing initiative to bring more patients into the discussion around precision medicine. PATIENT WEEK 27-30 September 2021 #PrecisionMedicine

International Ataxia Awareness Day 25th September

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

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.

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.

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

Klippel-Feil Syndrome Awareness Day 6 August (2021)

Klippel-Feil Syndrome Freedom empowers and unites patients and their families through peer support, education, research, and advocacy, for a lifetime of improved health care.

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

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

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.

Small Charity Week 14-19th June

Small Charity Week is a campaign which was first established by the Foundation for Social Improvement (the FSI) in 2010 to celebrate and raise the profile of the small charity sector. But from 2020 the campaign is now delivered by The FSI, NCVO, NAVCA, Local Giving and Small Charities Coalition, all passionate about the work of the Small Charity Sector. #SCWeek #SmallCharityWeek

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