Newsletter: EveryLife Foundation Faster Track – June, 2017

Newborn Screening Receives Funding Boost in Florida, Legislation Sent to Governor

Florida Governor Rick Scott has reached an agreement with state legislators on a budget for 2018, including provisions to implement screening for X-ALD and additional funding for Florida’s newborn screening centers, which have historically been significantly underfunded. This funding is crucial as it will allow the state to expand newborn screening for X-ALD and other diseases that could be screened for in future years. This is a major victory for the rare disease community, especially given that Governor Scott failed to increase funding for newborn screening in past budgets.

On June 5th, SB 1124, which would expand and enhance newborn screening in the state, was officially transmitted to Governor Scott from the legislature, where it passed with unanimous support in both chambers. The Governor has 15 days to act on the legislation.

The Foundation, in partnership with more than 100 patient organizations that endorsed the bill, is calling on advocates in Florida to contact Governor Scott to urge him to swiftly sign this critical legislation into law.

California Legislature Launches Bipartisan Rare Disease Caucus

Thanks to a partnership between the Foundation and California Action Link for Rare Diseases (CAL RARE), the California Legislature will launch a state caucus to tackle issues affecting California’s rare disease population.  The bipartisan Rare Disease California Caucus will be led by Assemblyman and Health Committee Member Rob Bonta (D-Oakland) and Assemblyman and Health Committee Vice Chair Brian Maienschein (R-San Diego).

In-District Lobby Days Provide Opportunity to Meet with Members of Congress

Rare Disease Legislative Advocates (RDLA) is hosting In-District Lobby Days to facilitate meetings for rare advocates across the country with their federal elected officials during the summer Congressional recess (August 7th through September 6th). Registration is open through July 4th. You can specify when you are available for meetings as well as the distance you are willing to travel.

Members of Congress need to hear regularly from constituents affected by rare disease, and meeting with them throughout the year is critical to building a relationship. These meetings are an opportunity to invite them to join the Rare Disease Congressional Caucus, and to highlight legislation that could be beneficial to the rare disease community as well as legislation that causes concern.

In order to help advocates prepare for effective meetings, RDLA will host a webinar on July 28th. Those registered for In-District Lobby Days will be invited to participate, and a recording will be available for anyone unable to join live. Brief background documents on legislation of greatest interest to the rare community will be available online next month as a resource.

Don’t miss this opportunity to let your Members of Congress know which federal issues are of greatest interest to you. Register today!

Registration Open for Scientific Workshop on Emerging Technologies for Rare Diseases

The Foundation will convene its ninth annual Rare Disease Scientific Workshop to explore emerging rare disease technologies on September 12th in Washington, DC. The goal of the workshop is to gather key thought-leaders from industry, the Food and Drug Administration (FDA), and patient organizations to discuss the latest biomedical advancements. Companies will present relevant case studies highlighting clinical and regulatory pathways to offer a deeper understanding of these emerging therapies. Senior leadership from the FDA will present an overview of resources and guidance available to patient organizations and industry. The conference is free to attend but participants must register in advance. Click here to register and view the latest agenda.

Ninth Annual Rare Artist Contest Now Open!

The Foundation is excited to announce that the ninth annual Rare Artist contest is now open for submissions.  This yearly contest, which celebrates the unique talents of the rare disease community, is open to rare disease patients, family members, caregivers and medical professionals.  The contest will accept entries through December 7th, and visitors to the Facebook gallery can vote for their favorites once every ten days until December 22nd.  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.  For more information on the Rare Artist contest, visit the program’s Facebook page.

If you plan to attend the Biotechnology Innovation Organization (BIO) International Convention in San Diego later this month, please visit one of the Rare Artist galleries that will be on display.  The Foundation will host a selection of works throughout the day during the Orphan and Rare Disease session track in room #3 on Tuesday, June 20th.  Additional works will be available to view during the BIO Exhibitor Hospitality Receptions taking place from 5:00 to 6:30 pm in the Exhibition Hall that evening.  We hope to see you there!

Nominations Now Open for Sixth Annual RareVoice Awards

Do you know a rare disease community leader who went above and beyond the call of duty in 2017?  Now is your opportunity to show appreciation by nominating them for a RareVoice Award!  Nominations are currently being accepted in the following categories: Congressional Staff, Government Agency Staff, State Patient Advocacy, Federal Patient Advocacy, and Teen Advocacy.  Nominations are open until July 31st, so be certain to submit your entry before it’s too late.

The RareVoice Awards will take place on Wednesday, November 15th, at Arena Stage in Washington, DC. For more information, visit the event website.

Thank you to our 2017 Sponsors, including Shire, Horizon, PhRMA, Vertex, BioMarin, Sanofi-Genzyme and Recordati.   Don’t miss your chance to show support for rare disease advocacy!  Contact Carol Kennedy, Chief Development Officer, at for sponsorship opportunities.

Tickets Available for Italian Street Painting Marin on June 24-25th in San Rafael

Commemorating the 50th anniversary of California’s “Summer of Love”, the Italian Street Painting Marin festival in downtown San Rafael on June 24-25th will feature more than 100 madonnari (street painters) creating works influenced by this watershed moment in American history. Tickets are still available on Italian Street Painting Marin’s website.

If you attend, please visit the Foundation’s booth to meet our staff and learn about our latest initiatives.  Our booth will feature selections from the 2016 Rare Artist contest, accompanied by statements from the artists.  With the 2017 Rare Artist contest now open, this fun and family-friendly event could provide inspiration for your entry this year!

For more information on Italian Street Painting Marin, visit the event website.

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

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