2017 World RARE Disease Day Community Events

World RARE Disease Day will be held on Tuesday, February 28, 2017.  Below is a list of organization and patient advocate events, both public and private, to raise awareness in local communities.

Click here to submit the details of your 2017 World RARE Disease Day event.

2017 Events

Location Date Type Description
 California
Newport Coast
 02/27/2017
 Community
The Denim & Diamonds Fashion Show

Come to to the first annual Denim and Diamonds Fashion Show benefiting Global Genes at The Pelican Hill Resort in Newport Coast, California. The evening will include cocktails, appetizers, and lots of fun advocating for rare! This will be a blue denim themed event so guests are encouraged to come decked out in their best denim outfits with a little sparkle added to their ensemble. All the models in the show are walking on behalf of a loved one or are advocating for themselves.

For more information, click here

 Connecticut
North Haven
 02/27/2017
 Education
Rare Disease Day 2017 hosted by the Frank H. Netter MD School of Medicine

Please join the Frank H. Netter MD School of Medicine and Quinnipiac University in celebrating our 3rd annual Rare Disease Day!

The global theme for 2017 is Research Brings Hope to People Living with a Rare Disease. Our speakers include Dr. Bruce Koeppen, Dr. Pramod Mistry, Lucas Kolasa, and a patient and parent panel.

Contact Molly Clarke with any questions or comments at molly.clarke@quinnipiac.edu.

For more information, click here

Illinois
Lake Forest
 02/28/17
 Community Cystinosis Rare Disease Day Campaign

Now through Rare Disease Day (February 28th), the Cystinosis Research Network invites family, friends and community members to ‘Make Their Mark.’ We will provide free “I am Cystinosis Aware” stickers to all who are interested in spreading awareness and education for this rare disease.

For more information click here

 Massachusetts
Boston
2/6/2017- 3/6/2017 
 Community All Aboard for Rare Disease Research

In honor of World RARE Disease Day, Cambridge BioMarketing is taking over advertisement space on the inside and outside of a train car on the MBTA’s Red Line from February 6th to March 6th, 2017. We’re asking the public to spot our rare train and spread the word on social media using #SupportTheSearch. For every post, a donation will be made to help to raise donations for rare disease research. If you don’t live in Boston, you can still help raise funds by posting a picture or inspirational message using #SupportTheSearch.

For more information, click here

Maryland
Baltimore
 2/1/2017-2/28/2017
Community  Rare Disease Day 2017 5K, 10K or Half

Join us for the 2nd annual Rare Disease Day virtual race sponsored by Running On Air and benefiting the PCD Foundation. As it is a virtual race, runners may participate no matter where they are located! Participants receive a beautiful medal with a world shaped like a heart in the middle. The people on the sides of the outer ring have a stained glass effect so light will shine through. Every registration will also get a bib number specifically designed for this event.

For more information, click here

Massachusetts & New Hampshire
 02/28/17
 Community  Supercuts Supports World Rare Disease Day

Over 80 local Supercuts in Massachusetts and New Hampshire will be wearing denim in honor of Rare Disease Day. The franchisees will also be making a monetary donation in honor of Area Supervisor Cheryl Gavin’s son, Kyle who passed away July 2008 from Acute Hemmorhagic Leukoencephalitis.

For more information, click here.

 New Jersey
Howell
  02/28/2017
 Community RARE Your Jeans!

Introducing the “RARE Your Jeans” Campaign!The new campaign asks that you take a pair of your jeans (old/new) and decorate them in any tasteful manner you’d like to make them unique or “RARE”. We hope you include “Fighting H.A.R.D.” somewhere on them!

On February 28, 2017 (Rare Disease Awareness Day) we are asking that you wear your RARE jeans, Global Genes Ribbon and an awareness shirt (yours or ours) to show kids who battle rare diseases and chronic illnesses that they aren’t alone! Take pictures and share them on social media using #RAREyourJeans and #WRDD2017!

For more information, click here

New Jersey
Trenton
02/27/17 
 Legislative  Celebrating Rare Disease Day in New Jersey

The Rare Disease Community in New Jersey has joined together to support a special event for legislators, legislative staff, the public and the media in celebration of the 10th Anniversary of World Rare Disease Day. Hear from speakers from the rare disease community including patients, patient advocates, legislators, and biomedical healthcare professionals and industry leaders.

Topics will include addressing the needs of people with rare diseases through legislation, inclusion of the patient voice in the drug development process, rare disease research initiatives, and the spirit of innovation in New Jersey.

Following the speakers, patient advocates will walk to the State House to meet with legislators.

For more information, click here

Pennsylvania
Harrisburg 
 03/14/17  Legislative Pennsylvania Rare Disease Day Advocacy Event

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Pennsylvania.

For more information, click here

Washington D.C. 
02/28/17 
 Legislative Sarcoidosis Awareness Month Resolution and It’s Impact

A Congressional Briefing on Sarcoidosis will take place from 12:00pm – 2:00pm at the Capitol Visitors Center and will attempt to make April Sarcoidosis Awareness Month means to the Sarcoidosis and Rare Disease Community. It is the first step to recognize a disease that affects over 200,000 people in the United States alone. The briefing will be sponsored by The Foundation for Sarcoidosis Research, Sarcoidosis of Long Island, and US Representative Lee Zeldin.

For more information, click here.

Your Event Here!
 
   
 
 
   
 
     
 
 
   
   
 
 
 
     
 
     
 
     
 
     
 
 
   
 
     
       
 
     
 
 
 
 
 
 
 
 
 
     
 
 
 
 
 
 
 
 
 
 
 
 

International

Location Date Type Description
Bangalore, India
 03/17/17- 03/18/17 
Community
Blue Ribbon Rare Diseases Symposium, Film Festival and Art Camp 2017

The Centre for Health Ecologies and Technology (CHET) at IIACD, Bangalore presents the second Blue Ribbon Rare Diseases Symposium, Art and Film Festival 2017 jointly under its Medical Humanities and Bioethics Initiative (MHBI) and its Autism and Rare Disease awareness (ARDA) outreach program. Through its research, advocacy and practice, CHET seeks to improve access to quality healthcare for people and families with rare diseases and raise awareness through art workshops, camps and exhibitions, film screenings and other creative media.

The two day Rare Disease Symposium 2017 on 17th & 18th of March will provide clinical and research updates by experts from leading research organizations, institutes, industry and state agencies. 

The Blue Ribbon Film festival 2017 on 17th & 18th (3-7 pm) has been curated and designed to provide therapeutic and creative spaces for rare disease communities to express and share their lived experiences with other key stakeholders and wider public. Award winning documentaries and feature films on rare diseases will be screened at the NGMA auditorium. The films combine a blend of the artistic and the experiential to convey the rich lives of people living with rare diseases and negotiating different realities.

The Blue Ribbon Art Camp on 19th March (jointly with NGMA) 2017 is designed as a patient-centric creative and therapeutic activity for children, young adults and adults with rare diseases to express their lived experiences of their diseases and heal. The art camp is open to the public and will be limited to 20 participants aged 10-20 from the rare disease community.