Sue Kahn

Board member | Non-profit Leader | Consultant | Rare Diseases | Patient Advocacy I Former Executive Director NTSAD.

[Sue Kahn @SusanRKahn]

@NTSAD Such unique and strong bonds are made when families gather in person!

[Sue Kahn @SusanRKahn]

@rarelikeher In general, it's a shorter path to trust the small "rare focused" company, but it really all depends on the company, their leadership, resources, and real commitment. Happy to talk further if you'd like.

[Sue Kahn @SusanRKahn]

Myra and Matt followed their instincts and learned so much from you, Blyth, and your family. I love this quote: “We were learning that pain and love could coexist. We weren’t risking our hearts, we were expanding them.”

[Courageous Parents @BlythCPN]

Charlie and I are honored to know and love this family and have held Havi in our arms numerous times; and to have watched as Myra and Matt found their way to this beautiful time with their girl. Myra's story. https://t.co/OtElYEF7Vx via @BostonGlobe

[Sue Kahn @SusanRKahn]

Kevin and Lisajane Romer honor their son Mathew’s memory every day with the meaningful initiatives undertaken by @MFRFoundation. I appreciate what we accomplished together @NTSAD and by partnering with so many others to benefit families affected by rare diseases.

[NTSAD @NTSAD]

Don't Miss the @MFRFoundation's 2022 "Sweetness and Laughter" Gala next Wed., April 27th, where NTSAD’s former Executive Director @SusanRKahn will be honored with the MFRF 2022 "See the Light" Award. Register now for the virtual event: https://t.co/IGF8zOprQF

[LogicBio Tx @logicbio]

This #IWD, we are celebrating the achievements of women pioneers at LogicBio & in the broader #biotech space who have paved the way for future generations of women and girls to lend their vision and help build a healthier, more equitable society. https://t.co/JjxWKpyon7

[Sue Kahn @SusanRKahn]

Lysosomal disease and leukodystrophy investigators and researchers, take note! #RareDisease

[NTSAD @NTSAD]

NTSAD and partners @_CTSF_ and @BluGenesFdn are launching the next round of research funding for basic research, translational studies, or clinical studies projects for Tay-Sachs, Canavan, GM1, and Sandhoff diseases. Pre-application due Feb. 18, 2022. https://t.co/OFfo5nLiSA

[Sue Kahn @SusanRKahn]

I’m excited to announce that I have joined the Board of @logicbio. I hope to represent the voices of patients & their families as @logicbio advances therapies for rare genetic diseases. I salute their leadership in strengthening the patient advocacy perspective on their Board.

[NTSAD @NTSAD]

USA today feeatured an amazing NTSAD family. Read about Jessie here.
https://t.co/nq2fPx6eDE

Support rare families this #GivingTuesday. https://t.co/IE3KmjkdXA

[Sue Kahn @SusanRKahn]

My heart is full (but a tad sad) on my last day with ⁦@NTSAD⁩. I’ve been so fortunate to work with a team that is 100% heart and passion; they’re all in for our ⁦@NTSAD⁩ families. Looking forward to the day when there are FDA-approved treatments #rarediseases

[Sue Kahn @SusanRKahn]

Such wonderful colleagues and friends who gathered together a few years ago! I think we were discussed planning a clinical trial for Late Onset Tay-Sachs & Sandhoff. @genome_gov @MassGeneralNews @SanofiGenzyme @NTSAD @SusanRKahn

[NTSAD @NTSAD]

Day 11 of Honoring Sue! @SusanRKahn led the Research Task Force and Board of Directors to expand NTSAD research initiatives to include newborn screening and early diagnosis. Make a gift to #ImagineandBelieve2021 in honor of Sue! https://t.co/0YZ6rlno0U
#14daysofSueKahn

[Sue Kahn @SusanRKahn]

Our @NTSAD communications team has surprised me with all these tweets, but I've loved seeing special moments from the past and people who mean so much to me and @NTSAD. Here I am with Dr. Ed Kolodny and @NTSAD's Diana Pangonis at the former @SanofiGenzyme Center. @SusanRKahn

[NTSAD @NTSAD]

Day 14 of Honoring Sue! During Sue Kahn’s tenure, she stewarded nearly $4 MM in research grants which were leveraged to $30 million in additional grants from other institutions and investments by industry to find effective treatments for Tay-Sachs, Canavan, GM1, and Sandhoff.

[Sue Kahn @SusanRKahn]

@NTSAD What a sweet message - I'll miss you! Thank you Mia, Devin, Brady, Sherri, Brian and Dylan, too! @SusanRKahn

[Sio Gene Therapies @SioGtx]

We’ve received FDA Fast Track Designation for our industry-leading #GeneTherapy, AXO-AAV-GM1, for the treatment of #GM1 gangliosidosis. We’re working diligently to bring hope to children & families affected by this rare, terminal disease. Read more: https://t.co/vTsUgpHkR7 $SIOX

[Sue Kahn @SusanRKahn]

Okay - this is a little too much about me, but I love being seen with Molly and Maddie, two of the cutest girls I know! @NTSAD

[NTSAD @NTSAD]

Day 5 of Honoring Sue! Throughout @SusanRKahn's 14 years of leadership, she has always kept the voices of families front and center of every meeting, project, and collaboration. Join us as we honor Sue at #ImagineandBelieve2021! https://t.co/YNvhsislWt

#14daysofSueKahn

[Sue Kahn @SusanRKahn]

Hope you’ll tune in on Oct 18 to hear my experienced colleagues share their helpful insights @RareDiseases #NORDSummit

[National Organization for Rare Disorders (NORD) @RareDiseases]

Register for #NORDSummit to attend the session, "Advanced Fundraising: Developing Your Business Proposition and Engaging Industry" featuring speakers @SusanRKahn (@NTSAD), Marianne Clancy (@curehht), @BobRauner1 (@UlfUnited) and @MichaelZincone (@pfizer): https://t.co/PLdILz981F

[Sue Kahn @SusanRKahn]

Proud to be part of ⁦@BridgeBioPharma⁩ Patient Day and help raise awareness about #Canavan disease along with Ruby and her family.

[Sue Kahn @SusanRKahn]

While going virtual is the right thing to do, I'm so so disappointed that I won't be seeing you in person, at least not on October 28th. At least you can now join us from anywhere in the world from the comfort of your home. Plus thanks to all our generous sponsors!

[NTSAD @NTSAD]

Register now for Imagine & Believe! Thurs., October 28, 7-8 p.m. EDT. Thank you to all our 2021 sponsors. https://t.co/YNvhsislWt

[Sue Kahn @SusanRKahn]

@WORLDSymposia I'm so honored to receive this award. Thank you! The @NTSAD families inspire me in my work with so many collaborative, hard-working and thoughtful colleagues.

[Sio Gene Therapies @SioGtx]

#GM1 Type 1 is the most severe form of the disease. Children with Type 1 typically present symptoms around 6 months of age when development may begin to slow & muscles may become stiff/weak with an eventual loss of motor skills. Learn more: https://t.co/kU2FWLPBrp @ASGCTherapy

[Global Genes @GlobalGenes]

"There needs to be a sense or urgency within the community and for researchers for treatment to be found." Cure Darian is streaming on the #GGSummit now with The Disorder Channel. #careaboutrare #raredisease @curegm1foundation #GM1Gangliosidosis #curegmi #GM1