Claudio Ales

[PTEN Foundation US @PTENFoundation]

The patient journey is unique and the reason behind our IRB approved and carefully curated patient registry launched collaboratively with @PTENItalia . Our community would like to see International Care Guidelines and we aim to collaborate with researchers to make this happen.

[Charis Eng, MD, PhD @CharisEngMDPhD]

One week until our #PTEN symposium in Cleveland!

[Claudio Ales @AlesClaudio]

Dona il tuo 5X1000 a #ptenitalia #ricerca #phts

[PTEN Foundation US @PTENFoundation]

The #PHTS community is thankful for our research teams and their tireless efforts to make life better for our patients! @StanfordMed @uclagenetics @BostonChildrens @ClevelandClinic @PTENItalia #pten #research

[Charis Eng, MD, PhD @CharisEngMDPhD]

Thank you @PTENFoundation for recognizing #CleClinicGenomics for our research and service https://t.co/Fxyo1pCiuz

[PTEN Foundation US @PTENFoundation]

Our foundation is 100% community supported and we are participating in a local grant challenge to win a $5000 grant. Today is the final day and we are up by 30 shares. If you are a Facebook user. Please consider sharing our vide…https://t.co/T8eaaQjDTV https://t.co/5CLkvs6yad

[EURORDIS-Rare Diseases Europe @eurordis]

Over 40 ePAG (European Patient Advocacy Group) representatives in #Paris today for the first face-to-face ePAG meeting! Working to ensuring the #patientvoice is heard in #EuropeanReferenceNetworks @EU_Health #ERN

[Claudio Ales @AlesClaudio]

My participation to the EURORDIS Photo Award 2018! https://t.co/lMt1cCKVOn

[Rare Disease Policy @RareDiseasesEU]

Very involved and active group of participants at our @RareDiseasesEU and #DGSANTE workshop ! @eurordis @Orphanet

[Claudio Ales @AlesClaudio]

New winter sinergies.

[Claudio Ales @AlesClaudio]

ERNs and ePAGs Representative state of art, update, mentoring program. #Eurordis

[Yann Le Cam @yann_eurordis]

The #raredisease power room is here today. Full room of committed leaders to create a positive change for patients!

[EURORDIS-Rare Diseases Europe @eurordis]

Council of National #RareDisease Alliances meeting today for updates on #ERN, social policy, @rarediseaseday, @RareConnect & #RareBarometer

[Yann Le Cam @yann_eurordis]

#EURORDIS & #raredisease alliances 15 countries in Europe together today to discuss #ERN ,
#ParliamentAdvocate4Rare.

[Claudio Ales @AlesClaudio]

#Orphanet nomenclature, Key word: integration, interopetability, implementation ePAGs involvement in Orphanet. #Eurordis

[Claudio Ales @AlesClaudio]

#Rarebarometer voices update, survey, connection patient community, ERNs & EPAGs Representatives. #Eurordis

[Claudio Ales @AlesClaudio]

CNA & CEF. News about Social Network #Rareconnect Platform Social Network. #Eurordis

[uniamomalattierare @uniamofimronlus]

#16ottobre #infoday #malattierare: centrale il ruolo dei pazienti, si deve lavorare in modo sinergico tutti insieme per il futuro delle #ERN

[Claudio Ales @AlesClaudio]

Very interesting news for the patients with PHTS https://t.co/JCt48eD7I7

[Claudio Ales @AlesClaudio]

Engaging at the National level with regulatory and HTA bodies. #EURORDISSummerSchool