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.

The Genetics Podcast

Exploring all things genetics. Cambridge University Alumnus and current CEO of Sano Genetics Dr Patrick Short analyses the science, interviews the experts and helps share the stories of people who have been personally affected by genetic conditions. To take part in the latest research studies mentioned in this podcast please visit sanogenetics.com/research

Ataxia, Did You Know‪?‬ by Dana Mauro

Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see.

'My rare disease' podcast

This is a platform where Katy Baker raises awareness of something that affects 1 in 15 people, rare disease. By chatting to patients, health professionals and advocates, we talk about all aspects of rare disease including relationships, mental health and much more. I cannot wait for you to hear some truly inspiring stories from some absolutely amazing people. From being diagnosed with a rare disease myself at 10 weeks old, it has given me the motivation to give others in the rare disease community an opportunity to share their thoughts and experiences.

Your Awareness day , details soon

Moebius Syndrome Awareness Day 24th January

Moebius Syndrome Awareness Day In 2011, Moebius Syndrome Awareness Day was started by the Many Faces of Moebius Syndrome, and has been embraced globally by other organizations that support efforts to raise awareness. The Moebius Syndrome Foundation recognizes the month of January as a time to raise awareness about this rare condition and educate the world about Moebius syndrome. We celebrate #MSAD by sharing information about Moebius syndrome, offering financial support and resources to approved events, encouraging people to wear purple, and raising awareness through various means and channels. (https://www.samebutdifferentcic.org.uk/ ) #Moebius

Your Awareness day , details soon

International Epilepsy Day. Second Monday of February

International Epilepsy Day is a special event which promotes awareness of epilepsy in more than 130 countries each year. Every year on the second Monday of February people join together to acknowledge and highlight the problems faced by people with epilepsy, their families and carers. #EpilepsyDay

Rare Disease Day takes place on the last day of February

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Bleeding Disorders Awareness Month (global)

March is nationally recognized as Bleeding Disorders Awareness Month. Join NHF in celebrating and honoring the bleeding disorders community. In 2016, thanks to NHF's advocacy efforts, March was officially designated as Bleeding Disorders Awareness Month.

Grin2B Awareness week - 3rd Week in March

What is GRIN2B? GRIN2B is not the name of a disease or disorder, but is the name of a gene located on the 12th chromosome. Its function is to encode a protein that forms a receptor responsible for sending chemical messages to the brain. A variation on the GRIN2B gene means that some portion of this specific genetic code either got deleted, duplicated or rearranged. As of 2018, changes to the GRIN2B gene are now being referred to as GRIN2B-Related Neurodevelopmental Disorder.

Your Awareness day , details soon

Brain Awareness Week (March 15-21, 2021)

Brain Awareness Week began in 1996 as a modest effort involving just 160 organizations in the United States. DABI organized the first Brain Awareness Week to bring together diverse groups with different interests from academia, government, and professional and advocacy organizations. The goal was to unite them with the common theme that brain research is the hope for treatments, preventions, and possible cures for brain diseases and disorders and to ensure a better quality of life at all ages. In the 25 years since its founding, Brain Awareness Week has evolved into a global education initiative that has included the participation of more than 7,300 partners in 117 countries. During the 2019 campaign alone, more than 2,500 partner events were held in 50 countries and 45 states.

World Autism Awareness Week ( w/c March 29th , 2021)

World Autism Awareness Week @Autism ⁩ ⁦ @NASCymru ⁩ ⁦ @AutismScotland ⁩

World Kidney Day 11th March

World Kidney Day is a global campaign aimed at raising awareness of the importance of our kidneys. World Kidney Day comes back every year. All across the globe many hundred events take place from public screenings in Argentina to Zumba marathons in Malaysia. We do it all to create awareness. Awareness about preventive behaviors, awareness about risk factors, and awareness about how to live with a kidney disease. We do this because we want kidney health for all. World Kidney Day is a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF).

CACNA1A March 19th

The first awareness day for #CACNA1A Gene

Lipodystrophy Awareness Day 31st March

Lipodystrophy is a group of rare conditions characterised by the lack of subcutaneous fat (normal fat storage under the skin). Lipodystrophy can be generalised (total fat loss) or partial (partial fat loss) and familial (inherited) or acquired (not inherited). The inability to store fat under the skin causes fat to be stored in places such as the muscles and liver which leads to severe metabolic complications including insulin resistance, diabetes, dyslipidaemia, heart disease, kidney disease, fatty liver disease and many others. #WorldLipodystrophyDay @LipodystrophyUk

Fabry Disease Awareness Month

The Fabry disease community celebrates Fabry Disease Awareness Month in the U.S. and in a few other countries in April each year. In the U.S. the National Fabry Disease Foundation and the Fabry Support & Information Group (FSIG) work with Fabry community members in each state to obtain as many official state governors’ proclamations as possible. We recognize Fabry disease awareness in April in every state but not every state has an official program or some states will only grant a week or a day. Each year you can see photos of governor's proclamations and a map of our progress at www.facebook.com/FabryDisease

Your Awareness day , details soon

Your Awareness day , details soon

International Pompe Day April 15th

The IPA is excited to announce that the international Pompe community has chosen April 15 as the annual International Pompe Day! The goal of International Pompe Day is to foster international awareness of Pompe Disease and the slogan for our day is "Together We Are Strong".

World Hemophilia Day April 17th (2021)

Adapting to Change, sustaining care in a new world World Hemophilia Day is about bringing the global bleeding disorders community together. With the COVID-19 pandemic having a major impact on people with a bleeding disorder, that objective has never been more important. The world has changed greatly over the last year, but one thing hasn’t: we are still in this together. Join us on April 17 and tell us how you have adapted to change during this unique time, and how you are working hard to help sustain care in a new world!

KIF1A awareness Day April 25th (2021)

The KIF1A.ORG community was recently featured in “The Gene: An Intimate History”, a film about how scientists, doctors and patients are unlocking the power of science to diagnose and treat genetic diseases. Now more than ever, our world is looking to pioneers and innovators to accelerate scientific breakthroughs that will improve and save lives. Part One of The Gene highlights the relentless KIF1A.ORG community and our mission to find a cure for KAND

Undiagnosed Children’s Day. Last Friday of April

Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Without a diagnosis it can be difficult to access basic information and support #UDC #Undiagnosed @SWAN_UK

Mast Cell May ( Mastocytosis and mast cell activation syndromes)

During the month of May we are asking you to come together to create your own fundraising ideas to support our vision to help deliver a cure for Mast Cell Diseases. With your help, we can ensure all those with these diseases receive early and correct diagnoses, optimal treatment and the emotional support they need. #MastCellMay #Mastocytosis

ALS Awareness Month (US)

ALS Awareness Month is a campaign to spread awareness of and raise funds for research for a cure for ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease).

Ehlers-Danlos syndromes (EDS), and hypermobility spectrum disorders (HSD) awareness month

Every May, people all over the world show their support for people living with and affected by the Ehlers-Danlos syndromes (EDS), and hypermobility spectrum disorders (HSD). Our shared mission is important throughout the year, but May is a time we all come together, share experiences, and highlight what is needed to progress change.

May is Behcet's Awareness Month (US)

May is Behcet's Awareness Month May 20th is International Behcet's Awareness Day Share this day with others on social media and add the hashtag #BehcetsDisease We need your help to raise awareness among the general public, healthcare professionals, policymakers and researchers in order to improve the lives of everyone impacted by Behcet’s Disease. Behcet's awareness is necessary so that symptoms can be recognized quickly and patients are able to receive a definitive diagnosis and the support they need. In addition, raising awareness assists with advocacy efforts by ensuring that patients have access to treatments and to increased globalization of research and patient advocacy initiatives.

Tuberous Sclerosis Awareness Day 15th May

TSC Global Awareness Day May 15th Tuberous Sclerosis Complex (TSC) is a rare genetic condition that affects around 1 million people worldwide. A person is born with TSC, meaning that the condition is not something that a person can develop over time. However, problems from TSC might not be obvious until later in life. TS Mums & Dads UK FB Group https://youtu.be/iBp1UFbIrOQ

Friedreich's Ataxia Awareness Day 15th May

May is FA Awareness Month, and May 15 is Friedreich's Ataxia Awareness Day. In honor of Friedreich's Ataxia Awareness Day, the Friedreich's Ataxia Research Alliance (FARA US) is joining the Friedreich's Ataxia Research Association's (fara-australia) LEND US SOME MUSCLE (#LUSM) Campaign. Join us . . . let's lend some muscle together to raise awareness and funds to support ground breaking research and #CUREFA. @cureFA_org

CDG awareness Day 16th May

What is CGD? Chronic Granulomatous Disorder (CGD) is a life-threatening and life-limiting genetic condition . CDG UK is a charity set up by the parents of affected families in order to provide support networks in the UK. Our first objective is to raise awareness of this extremely rare disease and to reach out to other families who are affected by it. (https://cdg-uk.org/)

Clinical Trials Day May 20th

Clinical Trials Day is a well-deserved ‘time out’ to recognize the people who conduct clinical trials and to say “thanks” for what they do every day to improve public health. This day of celebration also provides our community with a unique opportunity to raise awareness of clinical trials – and of clinical research as a career option – among the greater public. #ICTD2021 #ICTD #CTD #ClinicalTrials

Your Awareness day , details soon

CDKL5 Awareness Month

Each June, we work to educate and raise awareness about CDKL5 Deficiency Disorder. June has special meaning to the CDKL5 community, and June 17th is Worldwide CDKL5 Awareness Day.

Cystic Fibrosis (CF) Awareness week

CF Week This year's CF Week will take place from 14-20 June 2021. Stay tuned to find out what's in store for the week!

ALS Awareness Month (International) 1 – 30 June 2021

ALS Awareness Month (International) 1 – 30 June 2021 MND (UK) https://www.mndassociation.org/

Dravet Syndrome Awareness Month (mostly US)

Dravet Syndrome Awareness Month (mostly US) and June 23rd is International Dravet Syndrome Awareness Day Many hurdles exist in the Dravet syndrome (DS) community – including an understanding of the syndrome as well as the funds needed to research and find better treatment options.

Medcomms day 9th June

The whole idea is that on #MedComms day there is no actual plan. All sorts of people working in and around MedComms get involved in many different ways. And do their own thing. Much of the activity won’t be reported on formally, but we collect a number of contributions here at MedCommsDay.com to give you a taste of what happens and you’ll find all sorts of activity over on Twitter and Linkedin and Instagram and elsewhere. Look for hashtag #MedComms.

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 https://www.smallcharityweek.com/

Your Awareness day , details soon

Your Awareness day , details soon

Your Awareness day , details soon

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

July

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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

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.

Your Awareness day , details soon contact us

Your Awareness day , details soon contact us

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 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

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

 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.

Your Awareness day , details soon Please contact us

 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.

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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

Your Awareness day , details soon, Please contact us

Your Awareness day , details soon, Please contact us

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.

Your Awareness day , details soon, Please contact us

Your Awareness day , details soon, Please contact us

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