Living with Holt-Oram Syndrome logo
Contact person:
Kisha Isom
Other Patient Groups
Event in United States
RareDisease Day Speaker
During the weeks around
14 Jan 2020 - 06 Mar 2020 Several
Perthes Kids Rare Art Contest
We will be having our
01 Feb 2020 - 29 Feb 2020
Rare Disease Day Virtual
Join us for the 5th
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
Empowered #patientchat
You’re invited! Join
21 Feb 2020
Rare Disease Day Educational
ObjectivesTheme "Re-think,
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
Urgent Help for Rare Disease
For International Rare
24 Feb 2020 - 29 Feb 2020 Boston
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
Rare Disease Day at Metropolitan
The division of genetics
27 Feb 2020 New York City
Soft Bones Southwest Patient
The Phoenix Southwest
27 Feb 2020 - 29 Feb 2020 Gilbert, Phoenix
UPMC Children's Rare Disease
We will have a table
27 Feb 2020 Pittsburgh
KY Rare Disease Day 2020
We will have refreshments
27 Feb 2020 Frankfort
Rare Disease Day Symposium
Since 2015, the Frank
28 Feb 2020 North Haven, CT
Rare Disease Day 2020
The UNC Catalyst for
28 Feb 2020 Chapel Hill
Focus on Rare Disease:
Marking International
28 Feb 2020 Cambridge
Rare Disease Day at NIH
Each year, NCATS and
28 Feb 2020 Bethesda
28 Feb 2020 Austin
Rare Disease Day 2020!
Join us to celebrate
28 Feb 2020 Gainesville
RMS Rare Disease Day Fun
Robious Middle School
28 Feb 2020 Midlothian
Race for Ryland
Lace up your shoes
29 Feb 2020 San Antonio
2020 Vegas Cares About
Registration is open
29 Feb 2020 Henderson
Leap for a Cure
Join RSDSA for a mini-winter
29 Feb 2020 South Haven, MI
Rare Disease Day Symposium
One in 10 people in
29 Feb 2020 Grand Rapids
Rare Disease Day San Jose
Please join us as we
29 Feb 2020 San Jose
On line Kallmann Syndrome
On line meeting hosted
29 Feb 2020
Rock Your Rare Disease
This is a benefit concert,
29 Feb 2020 Jeffersonville
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
United States

Living with Holt-Oram Syndrome

1 in 100,000 can feel like such a lonely number, especially when you go your whole life without ever meeting anyone else with the same condition as you. That all changed with the group “Living with Holt-Oram Syndrome” on Facebook in 2012, which connected hundreds of people who had been diagnosed with the syndrome. Who were searching for a community where they can learn more about themselves and share in each other's experiences. A family was born on that social media platform, one that will host its first 'family reunion' on February 29, 2020 in recognition of Rare Disease Day.

What better way is there to express your Independence, Pride, and Creativity than to create pieces of art using the hands which have set you apart from the world, while meeting and enjoying the company of people who have walked in the shoes that you have.

Please RSVP by February 21,2020

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