2018 Global Genes RARE Patient Impact Grant to benefit CADASIL
CADASIL Advocacy, CADASIL News CADASIL, CADASIL grant, cadasil webinar, Grant, Patient ImpactLeave a Comment on 2018 Global Genes RARE Patient Impact Grant to benefit CADASIL
cureCADASIL was awarded a 2018 Global Genes RARE Patient Impact Grant […]
cureCADASIL Auction Fundraiser Starts September 1, 2017
CADASIL Fundraisers cadasil auction, cadasil fundraiser, support CADASIL1 Comment on cureCADASIL Auction Fundraiser Starts September 1, 2017
The cureCADASIL Association online auction will be held September […]
CADASIL Connection August 2017 Webinar Recording Available
CADASIL research CADASIL Connection, CADASIL Research, CADASIL Speaker Series, cadasil webinarLeave a Comment on CADASIL Connection August 2017 Webinar Recording Available
The following link will take you to the recorded August […]
CADASIL Research Highlighted by Rare Disease Report
CADASIL News, CADASIL research CADASIL biomarker, CADASIL publication, CADASIL Research, rare disease cadasil, RDR CADASILLeave a Comment on CADASIL Research Highlighted by Rare Disease Report
Rare Disease Report shared the news of the latest published […]
CADASIL Connection Webinar Speaker Series Announcement
CADASIL research CADASIL, CADASIL Research, cadasil webinar, rare disease, scientific webinarLeave a Comment on CADASIL Connection Webinar Speaker Series Announcement
Exciting progress is being made in understanding mechanisms of CADASIL mutations […]
Robert’s Story
CADASIL Family Stories cadasil diagnosis, CADASIL Story, multiple sclerosis, patient storyLeave a Comment on Robert’s Story
This is an edited version of a post Robert […]
Rare on the Road 2017 Attended by cureCADASIL Trustee
CADASIL Advocacy, CADASIL Conferences CADASIL advocacy, CADASIL conferenceLeave a Comment on Rare on the Road 2017 Attended by cureCADASIL Trustee
Nancy Maurer, cureCADASIL President and Trustee, attended RARE on the […]
2017 Rare Disease Week in DC with RDLA
CADASIL Advocacy CADASIL, CADASIL advocacy, Rare disease week, RDLALeave a Comment on 2017 Rare Disease Week in DC with RDLA
Feb.27 – March 2, 2017 Over 600 Rare Disease patients, […]
Tami’s Story
CADASIL Family Stories CADASIL, CADASIL patient, diagnosisLeave a Comment on Tami’s Story
Tami Kansas, USA Age 44 at diagnosis Editor’s Note: Tami […]
NC Rare Disease Coalition includes cureCADASIL Associate Trustee
CADASIL Advocacy 2016, CADASIL, CADASIL advocacy, NC RareLeave a Comment on NC Rare Disease Coalition includes cureCADASIL Associate Trustee
cureCADASIL Associate Trustee Sandra Talbird joined the newly formed NC […]
Ragazzo Family Fundraiser
CADASIL Fundraisers 2016, CADASIL, CADASIL advocacy, fundraiser, NYLeave a Comment on Ragazzo Family Fundraiser
In May 2016, Tony and Janice Ragazzo helped organize a […]
Soaring Above the Stoarm 5k Run and 1 mile walk for CADASIL 2016
CADASIL Awareness Events, CADASIL Fundraisers 5k, CADASIL, CADASIL Awareness, fundraiserLeave a Comment on Soaring Above the Stoarm 5k Run and 1 mile walk for CADASIL 2016
On May 7, the 2nd Annual Soaring Above the Storm […]
cureCADASIL and the NJ Devils
CADASIL Awareness Events, CADASIL Fundraisers awareness, CADASIL, hockey, NJLeave a Comment on cureCADASIL and the NJ Devils
On February 16, 2016, cureCADASIL was the Community Assist organization […]
Pennsylvania CADASIL patient raises funds and awareness
CADASIL Awareness Events, CADASIL Fundraisers awareness, CADASIL, fundraiser, PennsylvaniaLeave a Comment on Pennsylvania CADASIL patient raises funds and awareness
On February 7th, 2016 CADASIL patient Vanessa Prontnicki was honored […]
cureCADASIL spotlighted by Rare Disease Report
CADASIL News awareness, CADASIL, non-profit, rare diseaseLeave a Comment on cureCADASIL spotlighted by Rare Disease Report
Rare Disease Report is a website and weekly e-newsletter that […]
cureCADASIL Trustees attend Alzheimer’s Disease-Related Dementias Summit
CADASIL Conferences 2016, CADASIL, conference, NIHLeave a Comment on cureCADASIL Trustees attend Alzheimer’s Disease-Related Dementias Summit
On March 29-30, 2016, Trustees Ronnie Bradbury and Anne McGuinness […]
cureCADASIL Advocated for CADASIL Patients at 2016 Rare Disease Week on Capitol Hill
CADASIL Advocacy, CADASIL Conferences 2016, CADASIL, conference, rare disease day, RDLALeave a Comment on cureCADASIL Advocated for CADASIL Patients at 2016 Rare Disease Week on Capitol Hill
cureCADASIL Trustee and tireless volunteer Janice Ragazzo attended Rare Disease […]
CADASIL Photo Frames Abound on Social Media for Rare Disease Day 2016
CADASIL Awareness Events, CADASIL Family Stories 2016, awareness, CADASIL, rare disease dayLeave a Comment on CADASIL Photo Frames Abound on Social Media for Rare Disease Day 2016
In honor of Rare Disease Day in February, many patients […]
Article in Neurology Reviews on launch of the CADASIL Family Registry
CADASIL News CADASIL news, CADASIL registry, neurology registryLeave a Comment on Article in Neurology Reviews on launch of the CADASIL Family Registry
Click here to read the article NEWS FROM NORD New […]
How can I support cureCADASIL Association’s Mission?
CADASIL Advocacy, CADASIL Fundraisers CADASIL, fundraisingLeave a Comment on How can I support cureCADASIL Association’s Mission?
Looking for ideas on how to help raise money for […]
The Stigma of Rare Disease: How Do You Tell People About Your Condition?
CADASIL Family Stories, CADASIL News CADASIL, CADASIL questions, Global genesLeave a Comment on The Stigma of Rare Disease: How Do You Tell People About Your Condition?
by Janet Mills Posted on April 17, 2013 at: globalgenes.org/the-stigma-of-rare-disease-how-do-you-tell-people-about-your-condition […]
Jax’s Journey to CADASIL Diagnosis
CADASIL Family Stories CADASIL, CADASIL patient, diagnosisLeave a Comment on Jax’s Journey to CADASIL Diagnosis
Jax Weston-super-Mare, England, UK Age 40 at diagnosis of CADASIL […]
Emma’s Experience with CADASIL
CADASIL Family Stories CADASIL, CADASIL patient, diagnosisLeave a Comment on Emma’s Experience with CADASIL
Emma Cairns, Queensland, Australia Age 37 at diagnosis of CADASIL […]
Special feature: Ask Dr. Joe
Uncategorized CADASIL questionsLeave a Comment on Special feature: Ask Dr. Joe
ASK DR. JOE Special Feature Q: Can you tell me […]
2013 Rare Disease Day CADASIL Association
CADASIL Advocacy, CADASIL Conferences 2013, CADASIL Awareness, rare disease day, RDLALeave a Comment on 2013 Rare Disease Day CADASIL Association
2013 Rare Disease Day summaries from CADASIL Association leadership From […]
Special feature: Ask Dr. Joe
Uncategorized CADASIL questions, diagnosis, researchLeave a Comment on Special feature: Ask Dr. Joe
ASK DR. JOE Special feature Here are the questions submitted […]
Sonia’s Story
CADASIL Family Stories CADASIL, diagnosis, patient experience, patient storyLeave a Comment on Sonia’s Story
Sonia Vernon Prim Barrie, Ontario, Canada Age 28 at diagnosis […]
Courtney shares about her life with CADASIL
CADASIL Family Stories CADASIL, CADASIL patient, patient experienceLeave a Comment on Courtney shares about her life with CADASIL
Courtney Colbert Saucier, Mississippi Age 21 at diagnosis of CADASIL […]
Special Feature: Getting to Know Dr. Joe Arboleda
CADASIL research CADASIL Research, NOTCH, researchLeave a Comment on Special Feature: Getting to Know Dr. Joe Arboleda
Getting to Know Dr. Joe Arboleda Dr. Joseph F. Arboleda-Velasquez […]
Janet’s Story
CADASIL Family Stories CADASIL, diagnosis, patient storyLeave a Comment on Janet’s Story
Janet Mills Casper, Wyoming Age 49 at diagnosis of CADASIL […]
Karla’s Journey to a Diagnosis
CADASIL Family Stories CADASIL, diagnosis, patient storyLeave a Comment on Karla’s Journey to a Diagnosis
Karla Mechanicsburg, Ohio Age 40 at diagnosis of CADASIL I […]
In Memory of William C. Penry 1941-1999
CADASIL Memorials CADASIL, memorial, patient storyLeave a Comment on In Memory of William C. Penry 1941-1999
In Memory of William C. Penry 1941-1999 Father of Karla […]
2012 CADASIL Forum Conference, Utah
CADASIL Conferences CADASIL, CADASIL conferenceLeave a Comment on 2012 CADASIL Forum Conference, Utah
CADASIL Forum Five members of the Board of Trustees for […]