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.

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 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.

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.

ALS Awareness Month (International) 1 – 30 June 2021

ALS Awareness Month (International) 1 – 30 June 2021 MND (UK)

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!

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.

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

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. (

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

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

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.

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