Patient & Family Meetings and Events

NORD is Taking Applications NOW for the
Rare Disease Summer Family Camp 2017

For the second year, the National Organization for Rare Disorders (NORD) is proud to once again partner with The Hole in the Wall Gang Camp on a rare disease summer family camp in Connecticut! The camp provides a special opportunity for children and families impacted by rare diseases to join together for a weekend of pure fun — free of charge. Camp is open to 25 families who are located in the Northeast USA, and it will take place June 1-4, 2017 in Ashford, Connecticut at 555 Ashford Center Road. For details, and to download the application form, visit NORD. Don’t delay — submit your family’s application NOW.

Vegas Cares About Rare 5K Run / 1M Walk

In Celebration of International Rare Disease Day,
which takes place on the last day in February each year.

Saturday, February 25, 2017
Location: Kellogg Zaher Sports Complex, 7901 W. Washington Avenue, Las Vegas, Nevada 89128.

Proceeds from this event will benefit the Little Miss Hannah Foundation, a Las Vegas 501(c)(3) non-profit charity. The Little Miss Hannah Foundation assists families caring for children that are diagnosed with a rare disease, life-limiting or complex medical condition, and those children placed in palliative or hospice care. Families struggle to obtain expensive medical and therapy equipment designed to provide safety to these children and to improve the quality of their lives. The Little Miss Hannah Foundation provides this equipment at no cost to the families to enhance the quality of life of their children. This event is being organized by the Little Miss Hannah Foundation.

Registration fees: 5K Individual (Timed): $40 – 12/1 thru 1/31; $45 – 2/1 thru 2/23. 5K Team (Timed): $35 – 12/1 thru 1/31; $40 – 2/1 thru 2/23. 1M individual (Not timed): $30 – 10/1 thru 2/23. Virtual 5K: $35. All registrations include custom medal, tee-shirt and bib!

For more details and to download the event flyer, visit: Vegas Cares About Rare.

Opportunity to Create a Video to be Viewed Online
for International Rare Disease Day 2017

The UK’s National Institute for Health Research (NIHR) Rare Diseases Translational Research Collaboration (“RD-TRC”) wants to capture on film (as a video log, or ‘vlog’), or as an audio recording, what rare disease research means to you as a patient, caregiver or partner, or as a clinician or researcher. The RD-TRC states, “This can either take the form of a short 30-second video, an audio clip, or a simple transcript which we can use on our website and Twitter account to highlight why research is important and why patient involvement is key. We aim to have a library of your soundbites to share online and with our partners – including Genetic Alliance UK and EURORDIS – for International Rare Disease Day (February 28, 2017). You can send in film/audio yourself, or we can help – we want to make it as easy as possible for you. We will edit all materials in our office in Cambridge, and we will involve you at every stage – you will have the final say, and nothing will be shared without your consent.” To see an example of what the RD-TRC has previously made, visit their Vimeo page, which also offers numerous videos covering RD-TRC activities. To learn more, and to discuss your creative ideas and availability, contact the RD-TRC’s Kathryn Irons, PPI Lead.

11th Annual Princess Riley Bear Golf Outing

for the Cure Tay-Sachs Foundation

Saturday, August 12, 2017
Location: Coldwater Country Club, 270 Narrows Road, Coldwater, Michigan 49036, (517) 279-2100

Details haven’t been posted yet; send your e-mailed questions and keep checking the Cure Tay-Sachs Foundation events listings.

If you would like your event listed here, please send it to the web master.

The listing of any event or web page on the Lysosomal Disease Network web site does not imply or express any endorsement or guarantee of that event or of any information on that web page.