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DEE-P Connections @DEE_Pconnection

Connecting families with severe developmental & epileptic encephalopathies to information, resources and each other Joined December 2019
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DEE_Pconnection Profile Picture

DEE-P Connections @DEE_Pconnection

a week ago

Join us for a conversation about a promising clinical trial model to accelerate access to the wider community of #DEEs - basket trials - with @LongboardP Register: bit.ly/AccessCTs 4/29 @ 3:30ET

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DEE-P Connections @DEE_Pconnection

a month ago

More on our recent DEE survey and the power of sharing! #DEEs #awareness #community #share

DEE_Pconnection Profile Picture

DEE-P Connections @DEE_Pconnection

a month ago

Thank to you to everyone who helped prepare, attended and participated in this week's update from the Inchstone Project! There is so much left to do, but we are making progress. Thank you for walking on this journey with us.

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DEE-P Connections @DEE_Pconnection

a month ago

More on Purple Day. 🟣 #epilepsy #awareness #DEEs

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DEE-P Connections @DEE_Pconnection

a month ago

Every March 26 is Purple Day, the international day for epilepsy. It is a day to raise awareness, support related causes and share information. One of the most common actions is to wear purple. If you are wearing purple today we'd love to see it in the comments! #purpleday

DEE_Pconnection Profile Picture

DEE-P Connections @DEE_Pconnection

a month ago

Today the Inchstone Project Research Team will provide an important update on our efforts to create a range of assessment tools to better track progress for our loves ones. Please join us! loom.ly/Sxnk2Cs

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DEE-P Connections @DEE_Pconnection

a month ago

Tomorrow the Inchstone Project will share an update on the massive data collected via our recent DEE Parents Speak survey and explain how we are working as a global collaborative to ensure that every inchstone (not milestone) of progress can be tracked. loom.ly/Sxnk2Cs

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DEE-P Connections @DEE_Pconnection

a month ago

There are a number of efforts underway to improve communication about and prevention of SUDEP. This second webinar on SUDEP explores how some advocates are working to improve communication with families about SUDEP and prevent future cases of SUDEP. #sudep loom.ly/_XENKdA

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DEE-P Connections @DEE_Pconnection

a month ago

March 26 is Purple Day, the international day for epilepsy. Are you planning on wearing purple or have related activities that day?

DEE_Pconnection Profile Picture

DEE-P Connections @DEE_Pconnection

a month ago

In one week the Inchstone Project Research Team will provide an important update. That will include creating assessment tools to better measure progress in our loved ones, as well as the data collected from our DEE Parents Speak survey! #DEEs #metrics loom.ly/Sxnk2Cs

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DEE-P Connections @DEE_Pconnection

2 months ago

What do we know about SUDEP? What don’t we know? What is the state of the research? This webinar, the first in a series, helps answer those questions, and more, with three participating experts. loom.ly/j2S-w1M

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DEE-P Connections @DEE_Pconnection

2 months ago

For those who have trouble leaving the house with medically fragile children, telehealth has emerged as an incredible resource. That picked up in the COVID pandemic. Our past webinar focuses on telehealth, considerations and potential benefits. #telehealth loom.ly/Vg26qZw

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DEE-P Connections @DEE_Pconnection

2 months ago

On March 25, 6 to 7:30pm EST please join The Inchstone Project Research Team for an update on the progress of our efforts to create a range of assessment tools that can accurately measure progress in our loved ones. #DEEs #metrics #inchstone loom.ly/Sxnk2Cs

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DEE-P Connections @DEE_Pconnection

2 months ago

You are not alone. And we are not alone either as DEE-P has created partnerships with many wonderful organizations, groups, caregivers and advocates. 🙂 #DEEs #together #notalone #awareness

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DEE-P Connections @DEE_Pconnection

2 months ago

Are you more of a visual learner? While we share visuals on Facebook, you should also follow us over on Instagram! loom.ly/SqqCMMk

DEE_Pconnection Profile Picture

DEE-P Connections @DEE_Pconnection

2 months ago

We know that many within our community, around 50%, have a DEE that remains undiagnosed. To all those undiagnosed, we are honored to serve as your patient/family advocacy organization and are here for you! Please know, you’re never alone! #DEEs #undiagnosed

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DEE-P Connections @DEE_Pconnection

2 months ago

Today is National Rare Disease Day - a day to raise awareness of the nearly 10,000 rare diseases. It's also about improving access to treatment and medical representation for these individuals and their families. DEEs are rare, but you are not alone. #rarediseaseday #DEEs

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DEE-P Connections @DEE_Pconnection

2 months ago

Join us for a special webinar tomorrow, in honor of Rare Disease Day, on brain donation. Hear about the practical sides of this process as well as learn about how brain donation plays a crucial role in advancing scientific research/breakthroughs & more loom.ly/m6_r1NQ

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DEE-P Connections @DEE_Pconnection

2 months ago

On Thursday we will have a webinar discussion with rare epilepsy moms who have decided to donate theirs children’s brain tissue upon passing. We will discuss critical elements about this deeply personal & difficult decision in order to help you make yours. loom.ly/m6_r1NQ

DEE_Pconnection Profile Picture

DEE-P Connections @DEE_Pconnection

2 months ago

DEE-P Connections truly believes in the power of connection, that the rare are stronger together, and in building bridges to advance research, advocacy, policy, treatment, and the overall quality of life for all those with DEEs and their families. #DEEs #notalone

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