rare connect
Rare Disease Day
February 28, 2018
Worldwide rare disease awareness was celebrated on February 28, 2018. Week long activities made a big impact this year as rare disease organizations and advocates rallied together for this once-a-year opportunity to raise the voice of all rare and undiagnosed patients. This year’s theme was RESEARCH!
The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. This also provides a great opportunity to raise awareness of Erdheim-Chester Disease.
Let’s recapture our community efforts!
The ECD community of patients, family and friends, donors, ECDGA board and staff, and advocates participated in the week’s activities to make sure ECD was not left behind during this chance to raise awareness. Thank you to each and every one of those that contributed to these events!
IN THE NEWS
ECD patients and an ECD Care Center physician, Dr. Paul Hendrie, interviewed with reporters to help get the word out about rare disease.
BUZZ ON SOCIAL MEDIA
- Several online fundraisers were started to support the ECD Global Alliance
- New followers across all media accounts joined us
- About 40,000 people were reached with our posts, tags, shares, and likes
THE FACES OF ADVOCATES
Many supporters showed their spirit with paint and ECD awareness apparel.
ON THE HILL
Kathy Brewer participated in the following meetings in D.C. during the week of Rare Disease Day.
- Louisiana Sen. John Kennedy’s staff member, Kaitlyn Dwyer
- Louisiana Sen. Bill Cassidy’s Research Assistant, David Mills
- Ohio Sen. Sherrod Brown’s staff members, Jeremy Hekhuis (Legislative Director) and Radhika Gharpure (Legislative Fellow)
- Rare Artist event with board members, Dr. Juvianee Estrada-Veras and Jean Campbell
- Collaboration Panelist during Rare Disease Day at the NIH
- Meetings with NIH research staff were also held to advocate for ECD patients
The Occupational Health department at the NIH created a RDD poster using ECD patient data, showing how patients make the decision of returning to the workplace while facing a debilitating disease.
Dr. Estrada-Veras and Kathy Brewer at the Rare Artist event.
Kathy speaks on the importance of collaboration.
NIH team chats with Kathy about the ECD data used for this year’s RDD events.
“To bring collaboration to the medical world, to bring experts together, we needed to lead.”
– Kathleen Brewer, Founder and President
