Rare on the Road

Rare on the Road - Coming to Houston, Texas June 9, 2018

The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates. We are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you!

You’ll gain new skills and insights to take your advocacy to the next level. Join Global Genes and EveryLife Foundation in a city near you: June 9th: Houston, TX; June 30th: Salt Lake City, UT; July 21st: Nashville, TN.

If you're in Houston, Texas or surrounding area click the link below to register and Join APF Director of Patient Services, Edrin Williams "On the Road!"

Click here to register! It's complimentary!


Rare Artist Contest               

The EveryLife Foundation for Rare Diseases is excited to announce that the tenth annual Rare Artist contest is now open for submissions. This contest, which celebrates the unique talents of the rare disease community, is open to rare disease patients, family members, friends, caregivers and medical professionals.

Changes from past contests are as follows:

  • Entrants may now submit TWO entries in one of the four categories. Entrants may only win one award in their chosen category.
  • We have upgraded our system this year to ensure votes are tabulated accurately. Each vote is now logged to the user’s account, so we can track voting and ensure all numbers are accurate.

The contest will accept entries through October 19th, and visitors to the Facebook gallery can vote for their favorites once every ten days through October 26th. Two awards will be given in each category: one to the entry receiving the most votes on Facebook, and the other selected by a panel of rare disease community leaders. Award recipients in each of the four categories will receive the following prizes:

  • Children (4-11): $100 gift card
  • Teens (12-18): $250 gift card
  • Adults (19+): $500 gift card
  • Adults (19+) - Photography/Digital Art: $500 gift card

Award recipients will have their work displayed during Rare Disease Week on Capitol Hill at the Rare Artist reception in Washington, DC on February 27th, 2019. Artists with works chosen for this reception will be eligible for travel stipends to provide the opportunity to see their work displayed on Capitol Hill. 

For additional information including the governing rules, please visit the contest rules page. If you have questions about the contest, please email the contest curator, Grant Kerber, at gkerber@everylifefoundation.org.