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Patient Advocacy 

Legislative Liaisons Lead Push for Research Funding, Treatment Development, and Insurance Fairness

Sarah ChanTwenty-nine Alopecia Areata Legislative Liaisons and 61 other community group members met with 24 U.S. representatives and senators in April and May at the legislators’ local offices in cities and towns across America. The Legislative Liaisons were encouraged to bring family and support group members, as lawmakers are often more encouraged to act when they see the numbers of their constituents who are affected by alopecia areata. When meeting with their elected officials, the Legislative Liaisons shared their alopecia areata experience and asked the lawmakers to:

  • Advance medical research by providing the National Institutes of Health (NIH) with $32 billion in Fiscal Year 2015. Legislators were also urged to inquire about opportunities for alopecia areata research through the NIH’s new Accelerating Medicines Partnership, which is currently studying rheumatoid arthritis. 
  • Facilitate treatment development through the Food and Drug Administration’s Patient-Focused Drug Development Initiative
  • Improve patient care through encouraging the Centers for Medicare and Medicaid Services to consider policy changes that would promote fairness and commonsense with the application of cranial prosthetic benefits.

Sarah Chan and her daughter meet with Rep. Jared Huffman of California

Now approaching its third year, the Legislative Liaisons program is open to anyone in the alopecia areata community who wishes to establish and cultivate relationships with their U.S. representatives and senators in order to educate them about alopecia areata and encourage their support for our legislative objectives. Liaisons are assured, well-informed Americans speaking on behalf of themselves and their 6.5 million fellow citizens who share this disease. If you’re interested in learning more about the Alopecia Areata Legislative Liaison program, or even becoming a liaison yourself, please contact Gary Sherwood at or 415-472-3780.  

Alopecia Areata Legislative Liaison Day 

Capitol Hill Day Sept 2013 EllisonThe first Alopecia Areata Legislative Liaison Day on Capitol Hill, September 11, 2013, was a huge success as they participated in over two dozen meetings with elected officials in Washington, DC.  The Legislative Liaisons displayed an eagerness to learn the issues, matched by only by their eloquence in expressing them to both lawmakers and staff.  The Legislative Liaisons are not beltway insiders or policy experts.  They are assured, well-informed Americans speaking on behalf of not only themselves but the 6.5 million fellow citizens who share this disease.   

Congressman Keith Ellison (D-MN) meeting with NAAF Legislative Liaison Team 2 (VA, MN, IA) during Capitol Hill Day September 11, 2013. From left, Lisa West, Tyrone Folliard, Congressman Keith Ellison, Melody Sandell, and Kelly Anderson. 

Alopecia Areata May Be Selected for Further FDA Study

At the National Alopecia Areata Foundation’s International Conference in Washington, D.C. in July 2012, attendees were told they were going to change lives when they went to Capitol Hill.  And they did.  Thanks to the highly visible efforts of our NAAF advocates asking for treatment development guidance on alopecia areata from the Food and Drug Administration, alopecia areata is currently in contention to be one of twenty diseases selected by The Food and Drug Administration (FDA) for specific consideration through the patient-focused drug development initiative. 

There are some 12,000 known diseases in the world and the fact that alopecia areata was among only 39 nominated for this further assessment is an achievement in itself resulting from NAAF’s incredibly successful day on Capitol Hill.  We’ll be keeping you informed on progress of this exciting opportunity for the alopecia areata community.

FDA Jan Wolf

On October 25, 2012 the FDA heard testimony from those with alopecia areata at the Food and Drug Administration’s Public Meeting on Patient-Focused Drug Development.  Jan Wolf of Vienna, Virginia shared her alopecia areata experiences and insights.   She was accompanied by Ashley Zink, 15, of Mount Airy, Maryland, who emphasized how often alopecia areata strikes children.  You can read Jan's full testimony and NAAF's written comments here>>>

Advocacy Day on Capitol Hill in July 2012 was a Great Success

Befitting the setting, the 2012 NAAF Conference centerpiece was Advocacy Day on Capitol Hill, July 20, 2012.  Some 600 attendees, including many children, marched to the hill on a refreshingly (and surprisingly) cool Friday morning to have their photo taken on the East Capitol Steps and make their voices heard over the course of 200 appointments with their Senators and Congressional Representatives.  Issues most important to the NAAF community are $32 billion for the National Institutes of Health (NIH), guidance on alopecia areata treatment development from the Food and Drug Administration (FDA) which would lead to significant industry investment in alopecia areata research, and support of the MODDERN Cures Act (H.R. 3497), bipartisan legislation that encourages the development of innovative treatment options and diagnostic tests for conditions that currently lack in these areas.  Esteemed Congresswoman Jackie Speier, representing California’s 12th congressional district, inspired the NAAF advocates with a stirring address.  She is also the Democratic lead on NAAF’s letter to the FDA, her Republican counterpart being Congressman Bob Dold of Illinois.

The number of co-sponsors for the MODDERN Cures Act  which will help develop more possible treatments has steadily risen from 20 on that day to 43 . By any measure, this was the kind of impact NAAF was hoping to achieve, and the credit goes to everyone who participated in Advocacy Day, spreading the cause of alopecia areata research. Each and every one of these participants can be justly proud of their accomplishments. 

NAAF Unveils Legislative Liaison Program

NAAF has embarked on a new initiative which we believe will greatly multiply the effect of our advocacy efforts, and raise the profile of alopecia areata on the legislative stage as never before.  Legislative Liaisons will meet at least once a year with congressional representatives and senators at their local district offices.  As in Washington, NAAF will provide Liaisons with all the information needed to inform their representatives about the legislative issues that most impact the alopecia areata community.  And as in Washington, Liaisons will be encouraged to bring members of their local support group so lawmakers can see and hear how the decisions they make affect their constituents with alopecia areata.  Those interested in being a Legislative Liaison are encouraged to email Gary Sherwood or call 415-472-3780.

Learn more details about Legislative Liaisons and how you can become one.

Learn about the MODDERN Cures Act

November 29, 2011 Press Release on the MODDERN Cures Act

The National Alopecia Areata Foundation is a member of the National Health Council (NHC), the only organization of its kind that brings together all segments of the health care community to provide a united voice for more than 133 million people with chronic diseases and disabilities and their family caregivers.

Made up of more than 100 national health-related organizations, NHC's core membership includes approximately 50 of the national leading patient advocacy organizations, which control its governance. Other members include professional and membership associations, nonprofit organizations with an interest in health, and major pharmaceutical, health insurance, medical device, and biotechnology companies.

Learn more about the National Health Council.

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