Newsletter: EveryLife Foundation Faster Track – October, 2018

In Testimony, Foundation Board Chair Urges Senate to Act on Life-Saving Legislation

On Wednesday, October 3rd, Mark Dant testified before the Senate Health, Education, Labor and Pensions Committee’s Children and Families Subcommittee on the importance of expedited treatments for rare disease patients.  Mr. Dant urged Congress to pass the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures and Treatments; S. 1509 and companion bill H.R. 1223) and to fund a Center of Excellence for Rare Diseases and more specialized review divisions at the Food and Drug Administration.  To read a copy of Mr. Dant’s full testimony, click here. To view the October 3rd briefing, click here.


Help us Advance Rare Disease Policy – Register Today for Our Community Congress Meeting

Join us on Wednesday, October 24th as we convene our annual in-person Community Congress meeting at the City Club of Washington. Held from 9:00am – 2:30pm, this policy discussion is the community’s chance to help influence the Foundation’s policy focus in 2019. The morning session, held from 9:00am – 12:30pm, is open to both members and prospective members. The afternoon session, held from 12:30pm – 2:30pm, is restricted to members only and will consist of an in-depth discussions on Newborn Screening, Regulatory, and Public Policy. Those interested in attending can register here. A draft agenda is available on the registration site.


Kick-Off the J.P. Morgan Healthcare Conference at A Rare Affair for Rare Diseases on January 6th

Are you or your colleagues attending the annual J.P. Morgan Healthcare Conference? If so, please join us at the famous Sir Francis Drake Hotel in Union Square for A Rare Affair. This spectacular networking and wine tasting event to benefit the EveryLife Foundation will be held the Sunday before the start of the conference on January 6th, 2019, from 6:30 pm until 10 pm. The event draws finance and biotech executives, venture capitalists, wine enthusiasts and rare disease advocates.  Until November 30th, the EveryLife Foundation is offering discounted “early bird” tickets to this exclusive event. To purchase tickets, click here. Tickets routinely sell out, so purchase a sponsorship to guarantee seating. For more information, please visit www.rareaffair.org or email Carol Kennedy at ckennedy@everylifefoundation.org.


Enter Your Art in the Rare Artist Contest by October 19th

Only one week remains for entries in the 10th annual Rare Artist contest. Don’t miss your chance at the more than $3,000 prize pool! This is a great opportunity for members of the rare disease community to share their talents with the world. The contest recognizes two entrants from each category (Children, Teen, Adult and Adult Digital and Photography): one by popular vote, and another chosen by a panel of leaders from the rare disease community. Entering is easy on the Rare Artist contest Facebook page.  Not an artist? Visit the Rare Artist gallery on Facebook to view the amazing entries and vote for your favorite in each category. Voting is allowed once every ten days and will remain open through October 26th. All members of the rare disease community – including patients, caregivers, family, researchers and medical professionals – are welcome to enter artwork. For more information on the contest, visit the Rare Artist website. For all additional questions, please contact the contest curator, Grant Kerber, at gkerber@everylifefoundation.org.


Apply Now for Rare Disease Week Travel Stipends and 2019 Event Sponsorships

Applications for Rare Disease Week on Capitol Hill 2019 travel stipends are now available. Two representatives from each state will be eligible for stipends to attend Rare Disease Week on Capitol Hill, with stipend amounts ranging from $200 to $1000 depending on distance from Washington, DC. For more information on Rare Disease Week on Capitol Hill 2019 and to apply, click here.  Applications for travel stipends for Rare Disease Week on Capitol Hill are open through December 14th.

Additionally, the Foundation’s Rare Giving program is now accepting applications for sponsorship of upcoming rare disease events that encourage collaboration among rare diseases and/or promote audience engagement in advocacy for public policy. Examples of events that we have financially supported include the Conference for Adrenal Insufficiency, Utah Rare Symposium, Family Education Summit at Camp Sunshine, PFDD meeting for Charcot-Marie-Tooth and Related Inherited Neuropathies. To request sponsorship of your 2019 event, please submit a letter of request that includes the projected number of attendees, participating organizations, diseases covered, agenda and website links along with sponsorship levels and benefits to lcundiff@everylifefoundation.org by November 30th, 2018.


RareHub Offers Innovative Solution for Patient Organizations in Washington, DC

As part of our commitment to cross-disease collaboration and legislative advocacy, the Foundation is pleased to introduce our Rare Hub program, which will provide a shared office space for rare disease organizations in Washington, DC. This office space will be a place to foster alliances and innovation among rare disease organizations and amplify the community’s voice on Capitol Hill. We are pleased to have Parent Project Muscular Dystrophy, PKD Foundation, Children’s Cause for Cancer and the National Fragile X Foundation as Partners in our Rare Hub.  For more information on Rare Hub, visit the program homepage. Save the Date for our Open House on Tuesday December 4th!


Want To Join Our Expanding Team? EveryLife is Hiring!

We’re bringing some new faces to the EveryLife family. Are you a driven team-player who’s passionate about rare disease advocacy? Then we want you on our team! We are seeking applicants for the following roles:

We request that all applicants be based in Washington, DC, or the surrounding area. For more information on EveryLife job opportunities, visit our careers page.


Looking to stay informed on Foundation activities?  Follow the EveryLife Foundation on Facebook and Twitter. If you would like to sign up for our monthly newsletters, click here.

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