Nonprofit that supports parents of children with rare diseases drive the sciences to develop better therapies by leveraging state-of-the-art scientific advances
Joined December 2014
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- Following308
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Parent Innovation retweeted
I could re-watch this for a hundred times: an amazing TED Talk by @RosalindPicard!
An AI smartwatch that detects seizures | TEDxBeaconStreet
ted.com/talks/rosalind_picar… via @TEDTalks
Parent Innovation retweeted
Thank you @Forbes and @sarahskkim for sharing a little piece of our history & highlighting the work @nicoleboice has done for #raredisease #careaboutrare ow.ly/Mcl050tzoyy
Parent Innovation retweeted
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:
ted.com/talks/rosalind_picar…
Parent Innovation retweeted
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.
Parent Innovation retweeted
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 🦓🦓
Parent Innovation retweeted
Very powerful piece about living with epilepsy... Thx for sharing @kurteichenwald. Def worth reading.
Opinion: Studies show as many as half of all people with epilepsy have faced stigma based on their condition. buff.ly/2Sr7DQH
Parent Innovation retweeted
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
Parent Innovation retweeted
Medical and Scientific Advisory Board (MSAB) presents “Patients Driving Advances: From Research to Therapy” #2018GGSummit
Parent Innovation retweeted
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: bit.ly/2pBSXks
Parent Innovation retweeted
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: bit.ly/2vTriPl #PATIENTDRIVEN®
Parent Innovation retweeted
“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
Parent Innovation retweeted
“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
Parent Innovation retweeted
“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
Parent Innovation retweeted
“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
Parent Innovation retweeted
.@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
Parent Innovation retweeted
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. globalgenes.org/2018summit/ #2018GGSummit #CareAboutRare
Tevard Biosciences receives prestigious Golden Ticket from @Pfizer #rare #dravet #curedravet #cureepilepsy #patientdriven @pfizer_news pfizer.com/news/featured_sto…
Parent Innovation retweeted
STAT Plus: It was just announced that Tevard Biosciences and QurAlis will each receive one of @pfizer’s coveted “Golden Tickets.” buff.ly/2Qmg0Md
Congratulations to Tevard Biosciences! #RareDisease #genetherapy #patientdriven #Dravet #Duchenne
statnews.com/2018/09/12/pfiz…
Parent Innovation retweeted
Our biggest fans this week: @medialab, @ManeeshJuneja, @empatica. Thank you! via sumall.com/thankyou?utm_sour…
