Kay

CEO, Cambridge Rare Disease Network Founder and Director Alstrom Europe.
Founder of Alstrom Syndrome UK
@camraredisease

[Kay @smeazel]

https://t.co/N4lFqNYzQL P.7 to see how my kids are still making an impact on rare disease thinking!

[Kay @smeazel]

@BBCNews What a warrior Kate has been, to give insight into what true caring entails. RIP Derek.X

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

In case you missed it... #RAREsummit19 speakers Dr @SarahLeiter, CRDN trustee & medical doctor at @CUH_NHS Addenbrookes & Allison Watson of @Ring20UK sharing what RAREsummit means to them on @BBCLookEast with @BBCwestcott #RareDisease #Awareness https://t.co/2uTDIWuedS

[Timothy Barrett @Tim_Barrett2]

Filipe and Laura Alstrom Italy at DIMED rare disease day Padova

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

It's #RareDiseaseDay2019! Pick up @TheGuardian #RareDiseases campaign supplement where 2 of our trustees @GemmaChand & Prof Tim Cox, have supported with thought leader featured interviews https://t.co/aaJQK3iaPB with @MediaplanetUK #RareDiseases #RareDiseaseDay #ShowYourRare

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Last few days to get free tickets! Rare Disease Day Cambridge Evening Lecture 2019 | Cambridge Biomedical Research Centre by ⁦@NIHRBioResource⁩ & ⁦@camraredisease⁩ - 240 registered but we can still fit more in 😊Come & mingle #ShowYourRare https://t.co/Ua0WszpeCE

[Ric Lynn @Rickmlynn]

Come on all you trainee paediatricians. Join the @M4RareDiseases @RareRevolutionM
Plenty of information @BPSUtweet
A big thanks on @rarediseaseday to all who make BPSU such a success. @RCPCHtweets @PHE_uk @UCLchildhealth

[Kay @smeazel]

RDNN are looking for nurses and health visitors who work with rare diseases in the community setting or away from major centres, and also those working in non-commissioned services.

Could you help us? please email Helena at [email protected]

#rarediseases

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Rare Disease Day 2019: Cambridge Lecture and Networking - You're Invited - https://t.co/b5IZx7qXB8 https://t.co/YMqCNrLvi5

[EURORDIS-Rare Diseases Europe @eurordis]

Coming soon - a #RareBarometer survey in 23 languages on your experience of rare disease treatments. Open to patients, family members and carers. Don't miss the chance to have your say, register to join Rare Barometer Voices https://t.co/tkHzmrhOsr

[Emma Parker @mrsElParker]

Well after two terms James’ school have decided that they no longer want him and tonight they have permanently excluded him. Both me and his dad don’t even know how we feel. James is confused and upset. Tomorrow starts the fight for a provision that can meet his needs.

[Healx @healx]

We are #raredisease specialists and partner closely with #patientadvocacygroups to develop our unique patient-centric #drugdevelopment model. With so few patients suffering from a rare disease, the patients are the experts & we integrate their expertise into our discovery process

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

Looking forward to the @camscience #CSF2019 programme release next week. Loads of exciting and interesting Science events coming up in March!! https://t.co/lo1cbx6c5W

[Rick Thompson @RickSThomp]

An excellent article from @nature about our co-founder's story, and the power of #RareDisease #PatientGroups

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

An interesting article on harnessing #technology for good "Will We Be Cyborgs? Robots and the Future of Disability"https://t.co/CUSOJWlFAI @TheMightySite @karin-willison

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

@TimGuilliams founder and trustee of @camraredisease and CEO of @healx explains so eloquently ahead of #RAREfest18 why research into #RareDiseases can open doors into a better understanding of fundamental diseases & why #Cambridge is a place where magic happens @BBCLookEast

[StIvoScience @StIvoScience]

A few of our future medics/biomed/health students have planned to attend some of this event - should be interesting!

[Fight for Sight @fightforsightUK]

In or near Cambridge this weekend? Join us @camraredisease #RAREfest on Saturday! We'll be there with a stall, and our colleague @MariyaMoosajee will be talking about finding cures for genetic eye conditions. Tickets are FREE! https://t.co/s27Cv4WZRk

[Rare Disease UK @rarediseaseuk]

With the countdown to #RareDiseaseDay on, we wanted to remind you about one of this years’ videos ‘Our family: living with a rare condition’: https://t.co/l48i4TxIBp We are really looking forward to being able to share next years’ videos with you! #raredisease

[My Family Our Needs @weareMFON]

It's almost time for #RAREfest18 - don's miss this #free, key event on the #RareDisease calendar: https://t.co/FwVYTCrlQM 30 Nov - 1 Dec @Camraredisease

[CamRARE (Cambridge Rare Disease Network) @camraredisease]

@_noisolation will be exhibiting at #RAREfest18 with their #av1 on Sat 1 Dec! Oh, @patrick_j_short & @GilesYeo - you’ll both be there exhibiting & speaking too!😉You’ll be on first name terms with #AVI ...