BILL NUMBER: ACR 109	INTRODUCED
	BILL TEXT


INTRODUCED BY   Assembly Member Pan
   (Coauthors: Assembly Members Ammiano, Atkins, Eng, Garrick,
Gordon, Hayashi, Roger Hernández, Logue, Bonnie Lowenthal, Mitchell,
V. Manuel Pérez, Silva, Smyth, and Williams)

                        FEBRUARY 14, 2012

   Relative to Rare Disease Day.


	LEGISLATIVE COUNSEL'S DIGEST


   ACR 109, as introduced, Pan. Rare Disease Day.
   This measure would proclaim February 29, 2012, as Rare Disease Day
in California.
   Fiscal committee: no.



   WHEREAS, There are nearly 7,000 diseases and conditions considered
rare, each affecting fewer than 200,000 Americans; and
   WHEREAS, Of these 7,000 rare diseases, more than 80 percent of
them are considered ultra rare, affecting less than a few thousand
Americans; and
   WHEREAS, While each of these diseases may affect small numbers of
people, rare diseases as a group affect almost 30 million Americans;
and
   WHEREAS, Many rare diseases are serious and debilitating
conditions that have a significant impact on the lives of those
affected; and
   WHEREAS, While approximately 360 orphan drugs and biologics have
been approved for the treatment of rare diseases affecting between 11
and 14 million people according to the United States Food and Drug
Administration, that leaves well over 15 million Americans affected
by rare diseases with no treatment specific to their disease; and
   WHEREAS, Besides dealing with their specific medical problems,
individuals and their families affected by rare diseases struggle
with obtaining an accurate and timely diagnosis, few, if any,
treatment options, and problems related to accessing or being
reimbursed for treatment; and
   WHEREAS, While some rare diseases are relatively well known, many
others are not known at all by the public, making patients and their
families bear a large share of the burden for fundraising and
research; and
   WHEREAS, Because nearly one in 10 Americans have a rare disease,
Californians are among those affected by those diseases; and
   WHEREAS, Research into rare diseases builds greater understanding
of the nature of disease and serves as a foundation for innovation in
the United States; and
   WHEREAS, The National Organization for Rare Disorders (NORD) is
organizing a nationwide observance of Rare Disease Day on February
29, 2012, on which patients, medical professionals, researchers,
government officials, and companies developing treatments for rare
diseases will join together to focus attention on rare diseases as a
public health issue; and
   WHEREAS, The theme for Rare Disease Day is solidarity, reaffirming
the idea that people affected by rare diseases are "Rare But Strong
Together"; now, therefore, be it
   Resolved by the Assembly of the State of California, the Senate
thereof concurring, That the Legislature proclaims February 29, 2012,
as Rare Disease Day in California; and be it further
   Resolved, That the Chief Clerk of the Assembly transmit copies of
this resolution to the author for appropriate distribution.