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Contact person:
Carrie Barnhart
Other Patient Groups
Event in United States
RareDisease Day Speaker
During the weeks around
14 Jan 2020 - 06 Mar 2020 Several
Rare Disease Day Virtual
Join us for the 5th
01 Feb 2020 - 29 Feb 2020
Perthes Kids Rare Art Contest
We will be having our
01 Feb 2020 - 29 Feb 2020
Beyond the Diagnosis art
Broad Institute is
03 Feb 2020 - 30 Mar 2020 Cambridge
Rare Disease Family Night
The Rare Disease Family
04 Feb 2020 Paterson, NJ
$29 on the 29th
Little Zebra Fund is
15 Feb 2020 - 29 Feb 2020 Nationwide
Rare Disease Day Educational
ObjectivesTheme "Re-think,
21 Feb 2020
Empowered #patientchat
You’re invited! Join
21 Feb 2020
Second Annual World Rare
Join the Rare and Undiagnosed
22 Feb 2020 Charlotte, NC
Alabama Rare Disease Symposium
Join us for the 3rd
22 Feb 2020 Birmingham
SEE RARE RUN Virtual Race
SEE RARE RUN is hosting
23 Feb 2020 - 29 Feb 2020
Rare Disease Research at
Stop by the Yale New
26 Feb 2020 New Haven
NYPD Rare Disease Day
The NYC Police Department
27 Feb 2020 New York City, NY
KY Rare Disease Day 2020
We will have refreshments
27 Feb 2020 Frankfort
UPMC Children's Rare Disease
We will have a table
27 Feb 2020 Pittsburgh
Soft Bones Southwest Patient
The Phoenix Southwest
27 Feb 2020 - 29 Feb 2020 Gilbert, Phoenix
Rare Disease Day at Metropolitan
The division of genetics
27 Feb 2020 New York City
Focus on Rare Disease:
Marking International
28 Feb 2020 Cambridge
Rare Disease Day Symposium
Since 2015, the Frank
28 Feb 2020 North Haven, CT
Rare Disease Day at NIH
Each year, NCATS and
28 Feb 2020 Bethesda
Rare Disease Day 2020
The UNC Catalyst for
28 Feb 2020 Chapel Hill
28 Feb 2020 Austin
RMS Rare Disease Day Fun
Robious Middle School
28 Feb 2020 Midlothian
Rare Disease Day 2020!
Join us to celebrate
28 Feb 2020 Gainesville
2020 Vegas Cares About
Registration is open
29 Feb 2020 Henderson
Rare Disease Day Symposium
One in 10 people in
29 Feb 2020 Grand Rapids
Race for Ryland
Lace up your shoes
29 Feb 2020 San Antonio
On line Kallmann Syndrome
On line meeting hosted
29 Feb 2020
Rare Disease Day San Jose
Please join us as we
29 Feb 2020 San Jose
Rock Your Rare Disease
This is a benefit concert,
29 Feb 2020 Jeffersonville
Leap for a Cure
Join RSDSA for a mini-winter
29 Feb 2020 South Haven, MI
LA Clippers NBA Game Event
NORD and California
01 Mar 2020 Los Angeles
Topgolf Tournament for
Join us for a great
01 Mar 2020 Columbus
6th Annual Rare Disease
This is our 6th year
01 Feb 2021 - 28 Feb 2021
Spreading MED13L Awareness
MED13L is a very rare
01 Feb 2021 - 28 Feb 2021 Barrington; Philadelphia
Zebra 5K
Rare Disease Day may
01 Feb 2021 - 28 Feb 2021 New Hope
Move For A Diagnosis +
Announcing our “Move
01 Feb 2021 - 28 Feb 2021
Real Love, Rare Love in
Love For Kids, Inc.
14 Feb 2021 Ft. Worth
Bietti's Crystalline Dystrophy
Program: Launch a
15 Feb 2021 - 31 Mar 2021
California Rare Disease
California Rare Action
17 Feb 2021
Rare Disease Day Celebration
We are interviewing
22 Feb 2021 - 28 Feb 2021 MANDAN
North Carolina Rare Disease
North Carolina Rare
23 Feb 2021
Ohio Rare Disease Day Event
Ohio Rare Action Network
23 Feb 2021
West Virginia Rare Disease
West Virginia Rare
23 Feb 2021
Rare Disease Day Event
Join us online for
23 Feb 2021 - 27 Feb 2021
Arizona Rare Disease Day
Arizona Rare Action
24 Feb 2021
Colorado Rare Disease Day
Colorado Rare Action
24 Feb 2021
Indiana Rare Disease Day
Indiana Rare Action
24 Feb 2021
Nevada Rare Disease Day
Nevada Rare Action
24 Feb 2021
New Hampshire Rare Disease
New Hampshire Rare
24 Feb 2021
Virginia Rare Disease Day
Virginia Rare Action
24 Feb 2021
Massachusetts Rare Disease
Massachusetts Rare
24 Feb 2021
Kansas Rare Disease Day
Kansas Rare Action
24 Feb 2021
Unlocking Rare Disease
The NYSCF Research
24 Feb 2021
Rare Disease Day at Iowa
Rare Disease Day at
25 Feb 2021 Ames, Iowa
New York Rare Disease Day
New Jersey Rare Action
25 Feb 2021
Oklahoma Rare Disease Day
Oklahoma Rare Action
25 Feb 2021
Wisconsin Rare Disease
Wisconsin Rare Action
25 Feb 2021
Connecticut Rare Disease
Connecticut Rare Action
26 Feb 2021
Florida Rare Disease Day
Florida Rare Action
26 Feb 2021
Georgia Rare Disease Day
Georgia Rare Action
26 Feb 2021
Illinois Rare Disease Day
Illinois Rare Action
26 Feb 2021
South Carolina Rare Disease
South Carolina Rare
26 Feb 2021
Tennessee Rare Disease
Tennessee Rare Action
26 Feb 2021
See Rare Run Virtual Race
Welcome to the fourth SEE
26 Feb 2021 - 28 Feb 2021
8th Annual Rare Disease
Alabama Rare, Children's
26 Feb 2021 - 27 Feb 2021
Virtual Run for Rare
Firefly Fund is challenging
26 Feb 2021 - 28 Feb 2021
Healthcare and Advocacy
The Mission San Jose
26 Feb 2021
Arkansas Rare Disease Day
Arkansas Rare Action
27 Feb 2021
Louisiana Rare Disease
Louisiana Rare Action
27 Feb 2021
Rare Disease Day Bay Area
Rare Disease Day Bay
27 Feb 2021 - 28 Feb 2021 UK, Toronto, NYC,...
Lesch Nyhan Virtual Meeting
For Rare Disease Day
27 Feb 2021 - 28 Feb 2021 West Roxbury
The United States' Rare
The following locations/landmarks
28 Feb 2021
Delaware Rare Disease Day
Delaware Rare Action
28 Feb 2021
Texas Rare Disease Day
Texas Rare Action Network
28 Feb 2021
February 28th, 2021
28 Feb 2021 WORLDWIDE
Rare Disease Day At SkyView
2/28/21 is #RareDiseaseDay2021
28 Feb 2021 Atlanta
Promoting Life Skills Through
“Baking is done out
28 Feb 2021 Online
A Rare Disease and Mental
A Rare Disease and
28 Feb 2021 Brighton and San...
FMD Zebra's Unite
The FMDSA would like
28 Feb 2021 North Olmsted
Raise Awareness for KLS
The KLS Community has
28 Feb 2021 Manhattan, New York
Move2Advocate Pledge2Move
Move2Advocate, Pledge2Move
28 Feb 2021
Research for the CURE
The Charlotte and Gwenyth
28 Feb 2021 - 01 Mar 2021 Los Angeles
Maine Rare Disease Day
Maine Rare Action Network
01 Mar 2021 - 02 Mar 2021
Utah Rare Disease Day Virtual
Utah Rare Action Network
02 Mar 2021
Focus on rare disease:
Focus on rare disease:
03 Mar 2021 Cambridge
New Jersey Rare Disease
New Jersey Rare Action
04 Mar 2021
14th Annual Rare Disease
Hello, all! Come join
05 Mar 2021 Zoom(RSVP for link)
United States

Pain Advocate Warriors

After attending Rare Disease Week in Washington DC, I shall be returning home to Virginia Beach, Virginia. For the entire week I shall be advocating and lobbying for Rare Disease patients. Particularly I will be speaking up for pain management rights. Many rare diseases come with pain. I shall be speaking in front of the FDA, speaking on Capitol Hill with US Senators and US Representatives, and speaking at the National Institute of Health.

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Raise and join hands
  • 2019 Rare Disease Week, lobby day. I am the lady in pink. Met other advocates from Colorado. This year will be representing Virginia.
  • Advocating for Rare Disease Patients at Community Congress meetings, Rare Disease Advocates Awards December 2019. I am on the left. All three of us will be returning for Rare Disease Week..
Other friends in United States: