Fahr Better Together

Links to Research shared, (I’m not a brain expert) stories, and Fahrs with Friends... here for you. #RARE DISEASES #Aim To Raise Awareness RT n’er nec endorses

[Fahr Better Together @BetterFahr]

Primary Familial Brain Calcification - GeneReviews® - NCBI Bookshelf
4 gene variants.. https://t.co/sWWIW7yEuC

[The Guardian @guardian]

Why is Elon Musk telling us to 'take the red pill'? https://t.co/wsU0W46tPP

[Brain & Spine Foundation @brainspine]

Come and get involved with the Brain and Spine Foundation during Mental Health Awareness Week #MentalHealthAwarenessWeek #KindnessMatters

[Fahr Better Together @BetterFahr]

Links to research Fahrs and ataxia.. google search.

Fahr's disease in two siblings in a family: A case report https://t.co/O38Dej1WZ1

[Fahr Better Together @BetterFahr]

Imbalance can be a symptom of Fahrs, though not often common.

[Ataxia-and-me CIO 1184030 @Ataxia_and_Me]

Catch up with our #Ataxia awareness project featuring Guest #Blog posts at https://t.co/9GK8KesZE2
#kNOwATAXIA

Based in #Wales with a #Global following
please contact us, to share your #adventure

[British Neuroscience Association @BritishNeuro]

We've loved hearing everyone’s wonderful plans to celebrate the double FriYaY bank holiday and VE day, so in response have moved our Neuronal Communication webinar to Thurs 14th, 10:30 am. Register now for the chance to make something a little like this...https://t.co/d0NyNkAiq6

[The Brain Charity @TheBrainCharity]

If you’re creative this is a great chance to show off your skills!

What makes you smile?

#poetry #art #comics #photography #shortstories

[The Brain Charity @TheBrainCharity]

Join us for our virtual quiz night tomorrow (7th) 7-9pm (there’s a break at 8pm for you to go out to clap for carers).

We play via Zoom which you can download for FREE here https://t.co/hY4nmgyi0M

If you’d like to join in send us a message and we’ll give you the login details

[EURORDIS-Rare Diseases Europe @eurordis]

Prof. Alberto Pereira @albertompereir1 of @RareEndoERN is a key speaker at #ECRD2020 and is Theme Leader for Theme 3: '#ShareCareCure for #raredisease'. To help shape how we are transforming care for #rarediseases by 2030 please register now: https://t.co/Us8tZ7QFoW

[EURORDIS-Rare Diseases Europe @eurordis]

There are more life-changing therapies for people living with rare diseases in development than ever before, yet at current pace, it will still take decades to cover the unmet needs. More on Theme 5, Speakers, timings and event registration for #ECRD2020: https://t.co/xNA8IozYXb

[Simon Hay @simon_hay]

The new normal @BrainTumourOrg Board meeting yesterday. I am in awe of @BrainTumourCEO and everyone in the team who have adapted so fast to deliver MORE support, in new ways, to the brain tumour community in such challenging times. Thank you.

[Foresight in Rare Disease Policy @rare2030]

Only 3 days left to register for the European Conference on Rare Diseases & Orphan Products 2020 by 10 May https://t.co/RDldCNLfiX
Join us at the conference to help build the policies of the future! #ECRD2020

[Headway UK - the brain injury association @HeadwayUK]

A group of community heroes from Headway Southampton have been going the extra mile to support brain injury survivors during times of crisis: https://t.co/ZZXpWlJgMH @HeadwaySoton

[Headway UK - the brain injury association @HeadwayUK]

Brain injury survivor Sarah Louise Lennon shared this wonderful poem with us - it's a perfect message for everyone at this challenging time.

Feeling inspired? Reply to share your own poetry and creative works.

[Fahr Better Together @BetterFahr]

Not all are benign... get a second opinion!

[Headway UK - the brain injury association @HeadwayUK]

"It shows in my face. My head feels like it will explode, I feel sick, anxious and disorientated.”

With almost 90% of brain injury survivors reporting the negative impact of fatigue, we look at some of the early warning signs: https://t.co/cywaZwwEDH

[Headway UK - the brain injury association @HeadwayUK]

"Reach out to family and friends to explain how you are feeling and how they can help you."

@KavitaBasi shares her tips for coping with self isolation: https://t.co/hwni3cbcmi

[BBC Politics @BBCPolitics]

False positive coronavirus tests "caused by dead lung cells", says WHO technical lead on #Covid_19 Dr Maria Van Kerkhove

#Marr https://t.co/qhE3xTlFPr

[Fahr Better Together @BetterFahr]

Dementia is dementia.. whilst cognitive problems may exist in Fahrs ... it is coincidental not as a result of dementia in and of it self.