HJR 25-1021 — February 28 Rare Disease Day

HOUSEFirst JOINTRegular RESOLUTIONSession 25-1021Seventy-fifth BYGeneral REPRESENTATIVE(S)Assembly GarciaSTATE andOF Gilchrist,COLORADO Armagost,ENGROSSED Bacon,LLS Barron,NO. Bird, Boesenecker, Bradley, Brooks, Brown, Caldwell, Camacho, Clifford, DeGraaf, Duran, English, Espenoza, Feret, Froelich, Garcia Sander, Gonzalez R., Hamrick, Hartsook, Jackson, Johnson, Joseph, Keltie, Lieder, Lindstedt, Lukens, Mabrey, Martinez, Mauro, McCormick, Paschal, Phillips, Pugliese, Richardson, Rutinel, Rydin, Sirota, Smith, Soper, StewartR., Suckla, Taggart, Titone, Valdez, Velasco, Weinberg, Winter T., Woog, McCluskie;

alsoR25-0783.01 SENATOR(S)Nicole KippDenney x2297 HJR25-1021 HOUSE SPONSORSHIP Garcia and WinterGilchrist, F.,Armagost, Amabile,Bacon, Baisley,Barron, Ball,,Bird, Bridges,Boesenecker, Bright,Bradley, Carson,Brooks, Catlin,Brown, Cutter,Caldwell, Danielson,Camacho, Daugherty,Clifford, Exum,DeGraaf, Frizell,Duran, GonzalesEnglish, J.,Espenoza, Hinrichsen,Feret, Jodeh,Froelich, Kirkmeyer,Garcia Kolker,Sander, Liston,Gonzalez Lundeen,R., Marchman,Hamrick, MichaelsonHartsook, Jenet,Jackson, Mullica,Johnson, PeltonJoseph, B.,Keltie, PeltonLieder, Lindstedt, Lukens, Mabrey, Martinez, Mauro, McCluskie, McCormick, Paschal, Phillips, Pugliese, Richardson, Rutinel, Rydin, Sirota, Smith, Soper, Stewart R., Rich,Suckla, Roberts,Taggart, Rodriguez,Titone, Simpson,Valdez, Snyder,Velasco, Sullivan,Weinberg, Weissman,Winter Coleman.T., Woog SENATE SPONSORSHIP Kipp and Winter F., House Committees Senate Committees HOUSE JOINT RESOLUTION 25-1021 C ONCERNING THE DECLARATION OF F EBRUARY 28, 2025, AS R ARE D ISEASE D AY .

CONCERNINGWHEREAS, THEColoradans DECLARATIONwith OFrare FEBRUARYdiseases, 28,and 2025,their ASfamilies, RAREfriends, DISEASEand DAY.caretakers, know the challenges theyface everyday, such as finding knowledgeable providers, obtaining appropriate treatments, and paying and traveling for care, and the manyother ways in which life can be extra challenging because of a rare disease;

WHEREAS, Coloradanswithrarediseases, andtheirfamilies, friends, and caretakers,WHEREAS,Oneintenpeopleandmorethan500,000Coloradans knowlive thewith challenges they face every day, such as finding knowledgeable providers, obtaining appropriate treatments, and paying and traveling for care, and the many other ways in which life canbe extra challenging because of a rare disease;

and WHEREAS, OneAccording into tenthe peopleNational andInstitutes of Health, there are more than 500,00030 Coloradansmillion liveAmericans living with a rare disease;disease today;

and WHEREAS,g According0 toE thed National, InstitutesS ofHealth,e there2 areO morel thanr 30Shading milliondenotes AmericansHOUSE livingamendment. with a rare disease today;

andDouble WHEREAS,underlining Andenotes estimatedSENATE 15amendment. million children in the United States have arare disease, and sadly, 30% will not liveto seetheir fifth birthday;

andH WHEREAS,i Therer areCapital moreletters thanor 10,000bold rare& diseases,italic definednumbers asindicate medicalnew conditionsmaterial affectingto fewerthanbe 200,000added Americans,to andmostexistFne oflaw. these conditions may affect only a few hundred individuals;

Dashes through the words or numbers indicate deletions from existing law.

F WHEREAS,Anestimated15millionchildrenintheUnitedStates haveararedisease,andsadly,30%willnotlivetoseetheirfifthbirthday;

and WHEREAS, Therearemorethan10,000rarediseases,definedas medicalconditionsaffectingfewerthan200,000Americans,andmostof these conditions may affect only a few hundred individuals;

and WHEREAS,WHEREAS,Directmedicalcostsforpeoplewithrarediseasesare Direct medical costs for people with rare diseases are three to five times higher than those for nonrare diseases;

and WHEREAS, Fewer than 5% oftheof the known 10,000 rare diseases have an FDA-approved treatment;

and WHEREAS, In 1983, the National Organization for Rare Disorders pioneeredthepioneered the passage oftheof the federal "Orphan DrugAct",Drug Act", the world's first law incentivizing drug development for rare diseases by offering market exclusivity and tax credits;

and WHEREAS, The zebra is the official mascot for rare diseasepatientsdisease patients because, historically, medical professionals were taught that when they "hearhoofbeats""hear hoofbeats" they shouldnotshould expecttonot expect to see azebrabuta zebra but should look for the more common answer, a horse;

and WHEREAS, Today, we know that one in ten Americans is like a "zebra","zebra",livingwithararecondition;itisnotalwaysobvioustorecognize livingwithor ararediagnose condition;a person with a rare disease, and, as a result, this can cause adelayincareandoftennegativelyimpactaperson'squalityoflifeorlife expectancy;

itis not always obvious to recognize or diagnose a person with a rare disease, and,as a result, this can cause a delay in care and oftennegativelyimpactaperson's quality oflife orlife expectancy;

and PAGE-2- 2-HOUSE1021 JOINT RESOLUTION 25-1021 WHEREAS, We see our constituents with these conditions and acknowledge the need for better understanding, the need for access to care, and the financial impact on families;

and WHEREAS, We also see that these families, despite the challenges, live their lives with optimism, hope for the future, courage, kindness for others, and, most of all, acceptance that this is, through no fault oftheirof their own, the life that they have been granted;

now, therefore, BeBeItResolvedbytheHouseofRepresentativesoftheSeventy-fifth ItGeneralAssemblyoftheStateofColorado,theSenateconcurringherein: Resolved by the House ofRepresentatives ofthe Seventy-fifth GeneralAssemblyofthe State ofColorado, the Senate concurringherein:

That we, the members oftheof the Colorado General Assembly:

(1) DeclareFebruary28,Declare February28, 2025, RareDiseaseDayinRare Disease Dayin Colorado, tohelpto help raise awareness ofrareof rare diseases within Colorado;

(2) "Show ourstripes"our stripes" in solidaritywithsolidarity with our community ofindividualof individual "zebras" living with a rare disease;

(4) Salute these individuals for all that it means to livelivewitha with a rare disease and the humanity that they show in so doing;

and PAGE 3-HOUSE JOINT RESOLUTION 25-1021 (5) On this day, as we recognize Rare Disease Day around the country, take a moment to appreciatethe more than 500,000 Coloradans, and the more than 30 million Americans, who live with a rare disease,disease today.

~-3- ~1021 SPEAKER OF THE HOUSE PRESIDENT OF OF REPRESENTATIVES THE SENATE v~=~ Esther van Mourik CHIEF CLERK OF THE HOUSE SECRETARY OF OF REPRESENTATIVES THE SENATE PAGE 4-HOUSE JOINT RESOLUTION 25-1021