cureCADASIL ASSOCIATION © 2012-2016

CADASIL Association

P.O. Box 124

Helmetta, NJ 08828

Phone messages: 307-215-9840

info@cadasilassociation.org

CADASIL Association

P.O. Box 124

Helmetta, NJ 08828

Phone messages: 307-215-9840

info@cadasilassociation.org

CureCADASIL/CADASIL Association

P.O. Box 124

Helmetta, NJ 08828

Phone messages: 307-215-9840

info@cadasilassociation.org

2016

cureCADASIL Trustee Janice Ragazzo attended Rare Disease Week on Capitol Hill in Washington, DC.

This year, Janice also delivered letters written by CADASIL patients to their state's representatives. Everywhere she goes, Janice displays the cureCADASIL logo in photos.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2015

cureCADASIL Trustee Janice Ragazzo attended Rare Disease Week on Capitol Hill in Washington, DC.

She is seen several times in the video shown on the RDLA website. In the large group photo with red scarves, she is standing at the far right holding her cureCADASIL binder. http://rareadvocates.org/rdw/

 

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2014

CADASIL Association members attended World Rare Disease Day events in Washington, DC the week of February 25th-28th, 2014.

www.rarediseaseday.org

 

They joined RDLA (Rare Disease Legislative Advocates) and 200 other rare disease advocates at the following events:

 

Tuesday, February 25th: Legislative Conference

National Press Club, 529 14th Street NW, Washington, DC

9:00 am - 3:30 pm General Session

3:30 pm - 4:30 pm SoapBox Meeting

 

Wednesday, February 26th: Lobby Day

Top of the Hill, Reserve Officers Association

7:00 am - 8:30 am Lobby Training Breakfast

9:00 am - 5:00 pm Capitol Hill Meetings with Members of Congress & Congressional Staff

 

Thursday, February 27th: State Delegation Hill Meetings  ** New in 2014 **

9:00 am - 5 pm This was an optional day for advocates who wished to drop by Congressional Offices and attend meetings on behalf of advocates who were too sick or unable to come to DC.

 

Friday, February 28th: Rare Disease Day at the NIH (National Institute of Health)

NIH in Bethesda, Maryland

CADASIL Association members hosted a table and bulletin board displaying information about CADASIL.

 

 

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2013

CADASIL Association members attended World Rare Disease Day in Washington, DC on February 25-29, 2013

 

Association Trustees went to these scheduled events:

 

Monday, February 25, 2013 - 5:00pm to 9:00pm at the Carnegie Institution of Science, 1530 P Street Northwest, Washington DC

 

Panel Speakers:

 

Moderator:  Margaret Anderson, Executive Director of FasterCures/The Center for Accelerating Medical Solutions

Dr. Christopher Austin, Director of the National Center for Advancing Translational Sciences at the National Institutes of Health

Dr. Emil Kakkis, MD, PhD, President of the EveryLife Foundation for Rare Diseases

Marc Boutin, Executive Vice President & Chief Operating Officer, National Health Council

Chris & Hugh Hempel, Addi & Cassi Fund

 

Tuesday, February 26, 2013 - 8:30am to 4:30pm - Legislative Conference at the National Press Club Ballroom, 529 14th Street NW, Washington, DC

 

Wednesday, February 27, 2013 - RDLA Legislative Lobby Day - We were trained on how to lobby for vital Rare Disease Legislation, then we met with our state representatives in their House and Senate office buildings to discuss CADASIL and current Rare Disease Legislation.

 

Thursday & Friday, February 28 and March 1, 2013 - We attended Rare Disease Days at the NIH (National Institute of Health) in Bethesda, Maryland where we hosted a table and bulletin board displaying information about CADASIL.

 

 

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2012

In February 2012, before the CADASIL Association was formed, two advocates who would become Executive Trustees for the association attended World Rare Disease Day activities in Washington, DC to foster awareness of CADASIL.

 

CADASIL Association

P.O. Box 124

Helmetta, NJ 08828

Phone messages: 307-215-9840

info@cadasilassociation.org

cureCADASIL Association

 

10 Schalks Crossing Road

 

Suite 501A-133

 

Plainsboro, NJ  08536

 

 

Phone messages: 307-215-9840

 

info@cadasilassociation.org

2016 Rare Disease Day

Rare Disease Week on Capital Hill

Wonderful events to raise awareness for CADASIL and Rare Diseases

CLICK HERE FOR MORE INFO 

Janice Ragazzo with RDLA's Julia Jenkins

Janice Ragazzo with staff from New York Representative Maloney's office

Janice Ragazzo sharing a patient letter with Wyoming Representative Lummis