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Desleyann – The Fight!
I was 13 years old when I had my first TIA. I lost feeling in my left hand, left side of my tongue, sight and could not speak properly. I... -
CADASIL Participating in Rare Disease COVID-19 NIH Study
The NIH has released a one month survey in order to enroll people with rare conditions and look at whether their condition predisposes to more or less severe symptoms during... -
2020 Million Dollar Bike Ride a Success for CADASIL Research
2020 was unlike anything we have experienced in the past. The COVID-19 virus changed so many things in our country, including changing the Million Dollar Bike Ride for rare disease... -
Rare Genomics features CADASIL
A brief chat with Jane Gunther. Patient advocate associate for Rare Genomics, Lauren Fang, met up with cureCADASIL Trustee and now President, Jane Gunther, at the 2019 Global Genes Summit. Read... -
David and Eloise – CADASIL Journey Expressed Through Poetry
This patient story is adapted from the foreword of our new book of poems (Scud Clouds by David Keller and Eloise Bruce) about our journey since David was diagnosed with CADASIL. It... -
2019 Million Dollar Bike Ride a Success for CADASIL Research
On June 8, 2019 a team of rare disease warriors gathered as Team CADASIL to ride our first Million Dollar Bike Ride (MDBR)! It was an early morning as my... -
A Patient’s Experience Participating in CADASIL Research
There is an ongoing research study at University of California San Francisco (Mission Bay) for both clinically tested positive CADASIL patients AND undiagnosed family members, (siblings, parents, children, grandchildren, etc).We... -
CADASIL at the 2019 Rare Disease Innovation and Partnering Summit
www.raredisease-summit.comcureCADASIL partnered with Geisinger Health System to present on the ClinGen Data Sharing Program at the Rare Disease Innovation and Partnering Summit in Boston, MA on June 14,2019.CBI and EBD... -
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News/EventsNancy2021-03-01T18:34:36+00:00