Welcome to FARA’s first advocacy newsletter! 2020 brought many advocacy opportunities for FARA and the FA community, and 2021 is shaping up to be even busier! With the amount of material growing steadily, a separate newsletter was in order. You will still occasionally find time-sensitive information in the regular monthly newsletter but the majority of advocacy related material will now be shared here.  
 
And what a great time for this newsletter to start! Rare Disease Day will be celebrating its fourteenth year on February 28th. There are many opportunities listed below where you can raise awareness for rare diseases in general, and FA specifically. Although legislative efforts will be U.S. based, there are many events that can be experienced remotely throughout the world. Hopefully, this information will ignite a desire to get involved. Advocacy is simply to change “what is” into “what should be.” Join FARA in making that change possible! 
COVID-19 Response 
COVID-19 dominated 2020 and advocacy is no different. Throughout the last year, FARA continued with our advocacy partners to identify FA-related areas affected by the pandemic and take action. FARA has signed onto coalition letters covering topics such as funding, telemedicine, access issues and vaccination distribution with NORD, the EveryLife Foundation, MDA, Research!America, and the Michael J. Fox Foundation to name a few. The EveryLife Foundation also was quick to form a working group around this topic, which FARA joined immediately. Here is a great illustration of the work done by that group since March 2020. 
Rare Disease Day
Rare Disease Day began fourteen years ago in Europe. Since then, the movement to raise awareness has grown to include activities throughout the world. Here are some excellent opportunities for you to participate in:
Let Your Legislators Know - Rare Diseases Aren't Really That Rare! 

Rare Disease Day is all about raising awareness and creating change for the millions of patients and families impacted by rare disease. One of the ways to do this is by participating in advocacy events hosted by NORD Rare Action Network volunteers. These events are being held virtually across the country leading up to, on and after Rare Disease Day. 
Rare Across America is a program of the EveryLife Foundation and will take place between February 22nd and March 5th. During these two weeks advocates will have an opportunity to practice telling their story, attend a virtual Rare Disease Caucus briefing, and meet virtually with their federal legislators on March 3rd and 4th. Click here for the full schedule of events and register for the Fast Forward for Rare Practice Your Pitch Webinar and the Rare Disease Caucus Briefing. 
 
Registration to attend meetings with legislators as a part of the Rare Across America program is now closed. If you registered to attend, please don’t forget to check your meeting agenda on the Advocacy Associates’ platform. If you need more guidance on how to do so, please click here to view the Rare Across America training webinar recording. If you have any questions about Rare Across America, or if you are no longer able to attend, please email RDLA Coordinator Katelyn Laws at klaws@everylifefoundation.org. 
Rare Disease Day at NIH aims to raise awareness about rare diseases and the people they affect through highlighting NIH-supported rare disease research and development initiatives and encouraging dialogue amongst stakeholders in the space, including patients, advocates, researchers, and policymakers. Register here for this virtual event! It will run from 10:30 am – 5:30 pm. 

FARA congratulates Jacob Thompson for winning the NCATS Rare Diseases Are Not Rare! 2020 Challenge. His moving piece "Keep on Fighting" won first place! Jacob will share his story at Rare Disease Day at NIH 2021 at 11:20 am.

To hear Jacob's award winning piece, click the button below:
The FDA is hosting a virtual Rare Disease Day public meeting on March 5th from 9:00am – 4:00pm ET. This event will consist of presentations and interactive panel discussions. To learn more or to register, click here. 
Advocacy Training Webinars 
Advocating for a Rare Disease Advisory Council in Your State.
March 4, 2-3 pm
 
Interested in advocating for a Rare Disease Advisory Council (RDAC) in your state? An RDAC gives rare patients, families and other supporters an opportunity to advise state policymakers on ways to best address the unique challenges faced by the rare disease community.  
 
NORD is excited to launch its second RDAC toolkit, “Advocating for a Rare Disease Advisory Council in Your State.” This resource will help you navigate the legislative process and offers a step-by-step advocacy guide as well as additional tools to support an RDAC bill. Join NORD to hear directly from a state policymaker, a state Senate staff member and NORD’s Rare Action Network volunteers that have experience advocating for an RDAC in their state! To learn more or to register, click here. 
RARE on the Road is a rare disease leadership series hosted by Global Genes and the EveryLife Foundation, providing critical education and insight into the rare disease community. Due to the COVID-19 pandemic, all 2021 events in this series will be virtual. Click here to learn more and to register.
Capitol Hill Updates 
Newborn Screening Reauthorization Act: The Newborn Screening Saves Lives Reauthorization Act, H.R. 482, was introduced in the House of Representatives by Representative Lucille Roybal-Allard (CA) on January 25, 2021. This Act will continue critical federal programs that aid states to improve and expand their newborn screening programs, support parent and provider education, and ensure laboratory quality and surveillance for newborn screening. Authorizations for these programs expired in 2019. 
 
The EveryLife Foundation asks advocates to contact their Members of Congress to support the Newborn Screening Saves Lives Act, H.R 482. Click here to enter your information and have an automated message sent to your elected officials on your behalf. 
The RISE Act: Senator Edward Markey (D-MA), Senator Thom Tillis (R-NC), Representative Diana DeGette (D-CO) and Representative Fred Upton (R-MI) introduced the Research Investment to Spark the Economy (RISE) Act (H.R.869) in their respective chambers of Congress. The RISE Act would authorize $26 billion in funding to restart research, jumpstart crucial clinical trials, repair breaks in the career pipeline that jeopardize our nation’s scientific and technological capacity, and prevent a loss of our strategic research capacity. 
FARA Joins Rare Disease Organizations to Commend Janet Woodcock as FDA Acting Director:  82 rare disease patient organizations sent a letter to the Biden administration recognizing the appointment of Dr. Janet Woodcock as the Acting Commissioner of the FDA. The letter expresses the rare disease community’s support for her leadership and appreciation of the accomplishments she has spearheaded to date.
Ask new Members of Congress to join the Rare Disease Congressional Caucus:  The 2020 election not only resulted in a new President-Elect and Vice President-Elect, but also 65 new Members of Congress. The 117th Congress has 56 new U.S. Representatives from 28 states and 8 new Senators from 7 states and they were sworn into office on January 3, 2021. Invite your newly elected Member of Congress to join the Rare Disease Congressional Caucus. Click here to enter your information and automatically send an email to your Member. 
Announcements 
The Alliance for a Stronger FDA—which unites consumers, patient groups, health professions societies and industry in advocating for increased funding for the U.S. Food and Drug Administration (FDA)—announced its 2021 officers, including our own Ronald J. Bartek as President. Congratulations Ron! In addition to advocating for the agency, the Alliance has a central role in educating policymakers, media and the public about FDA’s broad responsibilities and growing mission.
Rare Artist Award Recipient

FARA congratulations Sophia Sieber-Davis for being selected as one of the 2020 Rare Artist Award Recipients by the EveryLife Foundation. Sophia's painting, shown here on the right, will be on display in the Capital during Rare Disease week this July. The Rare Artist contest will open again in June, 2021 for Rare Disease Week 2022 which is expected to return to the end of February.
Well done Massachusetts! The Massachusetts legislature passed an amendment, "An Act To Create a Rare Disease Advisory Council", within the larger healthcare bill, Senate Bill 2984, "An Act promoting a resilient health care system that puts patients first" at the end of 2020. This rare disease council will advise the Governor, the Legislature, and Department of Public Health on the incidence of rare disease in Massachusetts. Learn more here. FARA would like to thank our MA Ambassadors and FA families that helped make this law possible! 
One Person’s Impact 
In closing, FARA would like to celebrate the hard work of Ambassador Mary Nadon Scott.

Joining FARA at Rare Disease week in 2019, Mary caught the advocacy bug and there has been no stopping her since. Her continued effort to stay engaged with her elected officials has not only educated them on FA, but raised our community to a national platform when Senator Leahy highlighted Mary while addressing the Senate during the Justice Amy Coney Barrett’s Supreme Court confirmation hearing.

Most recently, Mary secured a Proclamation recognizing Feb 28 as Rare Disease Day in Vermont. Thank you, Mary, for your continued advocacy for FA!