2013 World Rare Disease Day Community Events

The sixth annual World Rare Disease Day will be held on Thursday, February 28, 2013.  Many organizations and patient advocates are putting on private and public events to bring awareness in their local communities.

If you would like to participate in one of the events listed, please contact the event organizer.  If you have an event that is not listed on here, please submit the details so we can share it!

California

2/28/2013 – (Sacramento, CA).  Rare Disease Day at the California State Capital.  11:00am – 2:00pm. Learn about living with rare diseases, meet representatives from involved organizations, speak with politicians and industry leaders, hear patient testimonials and share your story with others. sponsored by the International Pemphigus and Pemphigoid Foundation. Public event.

2/28/2013 – (San Diego, CA).  Fourth Annual Rare Disease Day Symposium, “Calcification Disorders – from Hardened Arteries to Soft Bones”.  The symposium will include various speakers as well as a roundtable session featuring advocacy group representatives.  Public event.

Florida

02/28/2013 – (Ft Walton Beach, FL).  Family Eye Care.  Staff wearing ribbons and having ribbons for donations and creating awareness for rare diseases including HLA B27 positive autoimmune disease.  Public event.

Illinois

2/28/2013 – (Chicago, IL).  Team Noah & Comer Children’s Care About Rare.  Join Team Noah to support rare disease advocacy and hear from Doctors who treat and research rare diseases.  Learn how you can help save someone’s life who is fighting a rare disease.  Public event.

2/28/2013 – (Downers Grove, IL).  Wear that you Care event at Pierce Downer and Kingsley Elementary schools.  Private event.

Indiana

2/23/2013 - University of Notre Dame.  The Center for Rare and Neglected Disease and Rare Health Exchange will be hosting a day-long event hosting researchers, physicians, patient families, and students to discuss their work in rare diseases.  Public event.

Kansas

2/28/2013 – (Haysville, KS). Histiocytosis Awareness Quilt Event. The Histiocytosis Awareness Quilt, containing the names of Histio Warriors and Angels from all over the world. The quilt will be on display from Feb 14 thru March 15.  Public event.

Massachusetts

2/28/2013 – (Boston, MA).  Rare Disease Day Massachusetts.  Join MassBio, the Shwachman-Diamond Syndrome Foundation, member companies, patient groups, patients and legislators to recognize Rare Disease Day at 2:00 pm at the State House, Nurses Hall.  Public event.

2/28/2013 – (Cambridge, MA). Whitehead Institute hosts a special event from 7:30-9:00 pm, featuring Whitehead’s latest rare disease research and the opportunity to hear from rare disease advocacy organizations from across New England. RSVP required.  Public event.

Nevada

2/19/2013 – (Las Vegas, NV).  Kops 4 Kids in recognition of World Rare Disease Day.  Meet Las Vegas’ finest police officers, McGruff, K-9 and SWAT — plus wear your jeans as they support those kids with rare diseases!  Las Vegas Metro Police Department, Cure 4 the Kids Foundation, and the Little Miss Hannah Foundation.  Public event.

2/22/2013 – (Henderson, NV).  3rd annual Little Miss Hannah’s “Jeans for Genes Day” school awareness event.  Elementary school students at Vanderburg ES, Lamping ES, and Barlett ES will receive an age-appropriate education on the genetics of rare disease and show their compassion by creating personalized cards of “hope.”  Private event.

New Hampshire

2/23/2013 – (Rochester, NH).  First Annual Stephanie Foster Rare and Undiagnosed Diseases Awareness Event.  We will be providing educational brochures and literature about NORD and rare disorders after each mass, starting the week preceding Rare Disease Day, February 28th, and will be selling Rare Disease Day bracelets and pins.  Contact info.  Public Event.

New York

2/28/2013 – (Albany, NY).  4:00 pm to 6:00 pm, Hilton Garden Inn.  Albany Medical College and Albany Medical Center will be hosting a rare disease forum geared towards patients, families, caregivers, and medical staff.  Multiple speakers will be sharing ideas on dealing with rare and complex medical disorders.  RSVP required. Public event.

Pennsylvania

2/17/2013 – (Munhall, PA).  Body Wrap Benefit for Batten’s Disease.  To broaden awareness of the rare Batten’s Disease, $5 of every wrap will be donated to 5-year-old Rex Timko who is currently suffering from Batten.  Public event.

2/28/2013 – (Pittsburg, PA).  Jamie’s Dream Team RARE Meetup.  Awareness evening for over 7,000+ RARE Diseases/Disorders with a variety of speakers.  RSVP Required.  Public event.

2/28/2013 – (Wynnewood, PA).  Wear that You Care at Penn Wynne Elementary School in coordination with the FIRST Foundation for Ichthyosis and Related Skin Types.  The children, faculty and staff are all being encouraged to wear denim (or blue) on Rare Disease Day in support of people affected by or living with a rare Disease. Private event.

Rhode Island

2/28/2013 – (Warwick, RI).   Rhode Island Rare Disease Foundation‘s “Abundant Hope” Rare Disease Day event. Bring the kids and enjoy great food, music, comedy and a magician. Let’s make some noise for the rare disease community!  Tickets required.  Public event.

South Dakota

3/01/2013 – (Sioux Falls, SD). Sioux Falls Rare Meetup.  In conjunction with the Sanford Rare Disease Symposium there will be a Rare Meet Up open to anyone with a rare disease or their family members. The Meet Up will feature the Global Genes team via videoconference and the CoRDS Team as well as a screening of the documentary Here. Us. Now.  Public event.

Texas

2/27/2013 – (Katy, TX). Jeans for Genes Day at Beckendorff Jr. High School.  The BDJH Bear Buddies will host a week-long school event to help raise awareness of 3 different rare genetic conditions by wearing jeans, making and hanging posters, distributing denim ribbons and creating videos to share with the entire school.  Private event.

2/28/2013 – (Austin, TX).  Rare Disease Day 2013 Rally.  Texas State Capitol from 8:30am to 10:30 am.  There will be various speakers such as doctors, nurses, researchers, dignitaries, musicians, special guests, patient and families with inspiring stories.  Public event.

Washington D.C.

2/25 to 3/1 - Join Rare Disease Legislative Advocates, Global Genes Project and 200+ rare and genetic disease advocates in Washington, DC for numerous activities leading up to World Rare Disease Day 2013. RSVP required.

Wisconsin

2/28/2013 – (New Berlin, WI). Jeans for Genes Day in Honor of Levi Ormeroid.  Students and staff from Eisenhower High School and West High School are encouraged to wear jeans, make a donation and receive a Genes Ribbon(tm) or a rubber bracelet from Levi.  Private event.

Australia

2/28/2013 – (Alderley) Australian Rare Chromosome Awareness Network.  10:00 am to 2:00 pm.  Information event with speakers from CarersQLD and DisabilityQLD.  A representatives from GeneticsQLD will also be in attendance for general questions.  RSVP required.

Canada

2/28/2013 – (Vancouver) International Rare Disease Day with the Rare Disease Foundation.  Bringing together researchers, volunteers and community to celebrate rare successes. Join them for the evening and find out where research dollars are spent and how families connect and draw support for one another.  Public event.

Iran

2/27/2013 - Rare Disease Day Conference 2013.  This Conference is cordially hosted by the Iranian Rare Disease Foundation (RADOIR) and it will have the honor of the presence of experts on rare diseases from Iran and other countries.  Event is free and open to the public.

Ireland

2/28/2013 - Rare Disorders Without Borders, hosted by the GRDO (Genetic and Rare Disorders Organization of Ireland).

Mexico

2/28/2013 - Red Sanfilippo Foundation.  Two days of conferences to raise awareness about rare diseases and Sanfilippo Syndrome addressed to general public and the medical community with particular emphasis on the diagnostic and the hope of the treatment in a near future.