Parent Innovation

Nonprofit that supports parents of children with rare diseases drive the sciences to develop better therapies by leveraging state-of-the-art scientific advances

[Dennis Bontempi, Ph.D. @denbonte]

I could re-watch this for a hundred times: an amazing TED Talk by @RosalindPicard!

An AI smartwatch that detects seizures | TEDxBeaconStreet
https://t.co/79yCN9hHFU via @TEDTalks

[Global Genes @GlobalGenes]

Thank you @Forbes and @sarahskkim for sharing a little piece of our history & highlighting the work @nicoleboice has done for #raredisease #careaboutrare https://t.co/wpnp1uOJWR

[Empatica @empatica]

The recent @TEDxBeaconSt talk delivered by our Co-founder & Chief Scientist @RosalindPicard is now featured on @TEDTalks homepage!
An important milestone in the efforts to raise #EpilepsyAwareness and understanding of #SUDEP.
Please retweet:
https://t.co/6o8q4ld1ZH

[LabCentral @LabCentral]

Very human moments today @labcentral. Many thanks to our panelists, privileged to hear their voices, motivations & passion for rare disease - The voices of a patient, parent, patient advocate, caregiver, investor & CEO. Thanks @roshan730 for moderating.

[Ana Mingorance @CNSdrughunter]

I recently met Richard Yang, who in the process of turning blind from a #RareDisease started the company @ReflectionBio. He says for thousand of rare diseases drug development will be “by patients, for patients”

He is right! And joins many amazing patient/parents 🦓🦓

[Bruce Booth @LifeSciVC]

Very powerful piece about living with epilepsy... Thx for sharing @kurteichenwald. Def worth reading.

[Jeffrey Flier @jflier]

At dinner celebrating Harvey Lodish, Whitehead Instit Pres David Page (and HMS grad) quotes Harvey (in his own words) as being “ an international rock star of bioscience”. And it’s true! 2 students are Nobelists,
8 NAS/NAM. Amazing! Still going strong. ⁦@WhiteheadInst⁩

[Patient Worthy @PatientWorthy]

Medical and Scientific Advisory Board (MSAB) presents “Patients Driving Advances: From Research to Therapy” #2018GGSummit

[Ovid Therapeutics @OvidRx]

Our CEO, @jmaxlevin, is participating in the @GlobalGenes Entrepreneurial Readiness Bootcamp during the #2018GGSummit today. Stop by his session at 9:30 am PT to learn about opportunities & challenges in a #raredisease research. Find the agenda here: https://t.co/tCk1iXbTDQ

[MassBio @MassBio]

Come hear directly from patients who will share their experiences of diagnosis, genetic testing, clinical trials and more at MassBio's Patient Advocacy Summit on 11/2. Learn more and register: https://t.co/pDK3LbE5VJ #PATIENTDRIVEN®

[Michele Rhee @michelerhee]

“How do you separate life and work?
...
I don’t.
...
It’s part of the healing process.”
— Daniel Fischer, Tevard

I just figured out how to explain my life. Also, I want to meet Daniel and hug him. Too much?

#2018GGSummit

[Nina DiPrimio @NinaDiPrimio]

“It is a family affair” and “people will help”. Figure out what you are best at to identify how to get involved and bring new people and passion to the conversation. #danielfischer #dravet #2018GGSummit

[Patient Worthy @PatientWorthy]

“Find something, and get involved. You’re not alone, find others and partner with them. Raise awareness. Bring the passion that patients and caregivers have, and the sense of urgency. Feeling that we can do something is healing.” key points from Daniel Fischer #2018GGSummit

[Patient Worthy @PatientWorthy]

“Nobody knows more about a rare disease than the families. Families have a lot of important information that should be shared with researchers.” -Daniel Fischer #20188GGSummit #dravet #TevardBiosciences

[nicoleboice @nicoleboice]

.@GlobalGenes is celebrating its 10th anniversary at #2018GGSummit. I am grateful to be part of the team committed to connect, empower & inspire the #raredisease community worldwide! #DecadeofHope

[Stephanie Fischer @RarePOV]

Very excited to attend @GlobalGenes RARE Patient Advocacy Summit on October 3-4. It's the largest gathering of #raredisease patients, advocates & thought leaders worldwide, featuring 100+ experts leading educational sessions. https://t.co/5rebRhV4it #2018GGSummit #CareAboutRare

[Parent Innovation @Parent_Powered]

Tevard Biosciences receives prestigious Golden Ticket from @Pfizer #rare #dravet #curedravet #cureepilepsy #patientdriven @pfizer_news https://t.co/oLwh0TMaFs

[STAT @statnews]

STAT Plus: It was just announced that Tevard Biosciences and QurAlis will each receive one of @pfizer’s coveted “Golden Tickets.” https://t.co/Vvq5ztRP4t

[Parent Innovation @Parent_Powered]

Congratulations to Tevard Biosciences! #RareDisease #genetherapy #patientdriven #Dravet #Duchenne
https://t.co/p6J1uO7LhV

[Rosalind Picard @RosalindPicard]

Our biggest fans this week: @medialab, @ManeeshJuneja, @empatica. Thank you! via https://t.co/HKu9cNoTAS