-
"Alexander's Film" premiered at the recent
@NiemannPickUK Annual Family Conference. The piece feat. Alexander Key and his parents who discuss their lives before & after Alex was diagnosed with NPC.#RareAware#CareAboutRare#shiningalightonNPC#RareDiseasehttp://ow.ly/INvU50xXkRI -
"No one is competing with someone else. It's all about giving each other a hand up." See what the RARE Foundation Allaince is all about.
#raredisease#CareAboutRare https://youtu.be/MltEnPqWWfQ pic.twitter.com/7OLz592unn
-
.
@onnofaber of@rdmd on the lack of treatments for#rarediseases: "There is a really big gap between what's technically possible and what we have available. And unfortunately, we are not always incentivized to solve those problems." https://www.youtube.com/watch?reload=9&v=FFtgzAZiv5s …#CareAboutRare -
A big thank you to
@GlobalGenes for another fantastic Rare Patient Advocacy Summit last week in San Diego. Our team appreciated the opportunity to meet with so many#raredisease advocates who shared what#RAREis means to them.#2019GGSummit#CareAboutRare pic.twitter.com/4H7ZQpbf4Z -
Representation matters. We're proud to support the DISORDER
#RareDisease Film Festival. You can join us.#CareAboutRare https://www.youtube.com/watch?v=Rw_MkKIG5Lg&feature=youtu.be … -
Thank you
@MarinusPharma for helping the#CDKL5 community have such fantastic videos! Running the first pivotal trial ever in CDD was already a major contribution, and helping us put together meetings like the@CDKL5Alliance one show you#CareAboutRare
https://www.youtube.com/watch?v=b3u3ugUjg6k … -
I wish life was easier for him but having a degenerative movement disorder is all he's ever known. Does he realize how
#relentless &#resilient he is? Getting steps in on a beautiful sunny morning.#KIF1A#CareAboutRARE#Ataxia#spasticparaplegiapic.twitter.com/kMERCC2m07 -
Congratulations to
@EveryLifeOrg for 10 years of empowering#raredisease patients & caregivers to educate legislators & regulators about the unmet needs of the#raredisease community https://www.youtube.com/watch?v=Ru06Id7F37E&feature=youtu.be …#CareAboutRare -
Gets me every time. These two... I know what my wish is.
@KIF1A#CareAboutRare pic.twitter.com/pkV2c8RLGD -
Happy
#WarriorWednesday! Meet KIF1A warrior Mario from Spain. KIF1A may take away his ability to walk and cause him to fall down several times a day, but he is a pro motorbike driver! When there's a wheel, there's a way.#CareAboutRare#Relentlesspic.twitter.com/W6ns6WKHGj -
"It doesn't do us any good to sit inside and wallow in it. It's better for us to go out and talk about it." One family shares the powerful story of their son Tanner, who has
#CDKL5 deficiency disorder@CDKL5USA#CareAboutRare https://youtu.be/KfqQOPZ9fiE -
Today is
#RareDiseaseDay. Show your support for the 350 million people worldwide who are affected by rare disease. We believe it is a moral imperative to increase visibility of families facing rare disease & drive advances that can bring them hope.#CareAboutRare#jeansforgenespic.twitter.com/hir9uMf2mP -
Remember last year's
@GlobalGenes RARE Patient Advocacy Summit? https://youtu.be/RCUulOBn4As Be informed, be inspired, be there October 3-4! https://globalgenes.org/2018summit/#RareDisease#2018GGSummit#CareAboutRare -
Curious about RARE Patient Advocacy Summit? Check out video of highlights from 2017 & hear why people attend year after year: "there's always something that you can learn and there's so much gained from information shared here" http://ow.ly/NV0D30lsaM9
#2018GGSummit#CareAboutRare -
Happy
#WarriorWednesday! Meet KIF1A Kid Hannah. She lives life all the way and isn't afraid to try new things. Check out this amazing interview where Hannah finishes the race!#CareAboutRare https://m.youtube.com/watch?feature=share&v=SW_P_UMlpeE … -
Amazing community
@tsalliance striking out epilepsy with my pal@fritts_seth from the Alliance and@GlobalGenes#CareAboutRare pic.twitter.com/Rg8sNPMJ7A -
Watch as
@MarquetteCHS takes our#choosekind pledge for#WRDD2018!@harmony4hope@trapperschoepp @peterdankelson@ccakids@globalgenes#sharerare#careaboutrare pic.twitter.com/5vUqe2yaR6 -
Four Arizona families live with
@PittHopkins, and the@Dbacks &@DougDucey are helping to raise awareness about the syndrome.#CareAboutRare pic.twitter.com/MjCl1x5G1tWatch the Arizona Diamondbacks on FOX Sports Arizona or FOX Sports GOPowered by SnappyTV
Čini se da učitavanje traje već neko vrijeme.
Twitter je možda preopterećen ili ima kratkotrajnih poteškoća u radu. Pokušajte ponovno ili potražite dodatne informacije u odjeljku Status Twittera.
Pies fly