{"id":26067,"date":"2026-02-20T11:49:13","date_gmt":"2026-02-20T15:49:13","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=26067"},"modified":"2026-02-20T11:53:32","modified_gmt":"2026-02-20T15:53:32","slug":"madethisway-how-were-claiming-rare-during-rare-disease-week-2026","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/madethisway-how-were-claiming-rare-during-rare-disease-week-2026\/","title":{"rendered":"#MadeThisWay: How We\u2019re Claiming Rare During Rare Disease Week 2026"},"content":{"rendered":"

At Emily\u2019s Entourage (EE), rare isn\u2019t something we tiptoe around.<\/b>
\n<\/span>It isn\u2019t something to soften, explain away, or make smaller so it\u2019s easier for the world to digest.<\/span><\/p>\n

This Rare Disease Week, we\u2019re showing up boldly. Proudly. Out loud.<\/span>
\n<\/span>Because rare isn\u2019t a flaw to be erased\u2014it\u2019s an identity to be claimed<\/b>.<\/span><\/p>\n

Welcome to<\/span> #ExtraordinRARE 2026,<\/b> shaped this year by a simple, unmistakable truth:<\/span><\/p>\n

We were #MadeThisWay.<\/b><\/p>\n

\"\"<\/p>\n

Rare, By Definition\u2014and By Design<\/b><\/h3>\n

In the United States, a disease affecting fewer than 200,000 people is considered rare. Cystic fibrosis (CF) affects approximately 40,000 Americans and more than 105,000 people worldwide, placing it firmly in the rare disease category.<\/span><\/p>\n

But within CF exists an even rarer reality.<\/span><\/p>\n

Bu <\/span>final 10%<\/b> of people with CF\u2014those who do not benefit from currently available mutation-targeted therapies\u2014represent an ultra-rare community within an already rare disease.\u00a0<\/span><\/p>\n

This is the community EE exists to serve. And it\u2019s why we refuse to accept \u201crare\u201d as a reason to slow down or disappear.<\/span><\/p>\n

Because rare isn\u2019t small.\u00a0<\/span><\/p>\n

Rare matters.<\/span>
\n<\/span>And those with rare mutations of CF deserve lifesaving solutions fast.<\/span><\/p>\n

\"\"<\/span>#ExtraordinRARE, Made This Way<\/b><\/h3>\n

For years, people with rare diseases have been told to wait patiently\u2014for attention, for funding, for answers.<\/span><\/p>\n

This year\u2019s campaign says something different.<\/span><\/p>\n

We\u2019re not waiting. <\/b>We won\u2019t be quiet.<\/b>
\n<\/b>And we\u2019re not apologizing for demanding attention.<\/b><\/p>\n

#ExtraordinRARE<\/b> has always been about celebrating the people who live rare every day\u2014their resilience, their ingenuity, their refusal to be left behind.<\/span><\/p>\n

#MadeThisWay<\/b> is how that truth shows up in 2026.<\/span><\/p>\n

It\u2019s about claiming space, honoring the advocacy, urgency, and strength that rare communities have built long before the system was ready to meet them, and demanding that we act fast and with urgency to address our critical needs.<\/span><\/p>\n

#MadeThisWay<\/b> is not a slogan.<\/span>
\n<\/span>It\u2019s a declaration.<\/span><\/p>\n

We are here. We are proud. And we are moving lifesaving science forward quickly\u2014together.<\/span><\/p>\n

Proof, Not Promises<\/b><\/h3>\n

And that\u2019s where Emily\u2019s Entourage (EE) comes in.<\/span><\/p>\n

Every day, we take on the hardest challenges facing the final 10%\u2014funding bold science, advancing clinical trials, and rejecting the idea that \u201ctoo rare\u201d means \u201ctoo difficult.\u201d We take as many shots on goal as possible, because breakthroughs aren\u2019t born from a single bet, but from vision, strategy, and tenacity applied over time.<\/span><\/p>\n

That commitment shows up in real, measurable progress.<\/span><\/p>\n

As of January 2026, Emily\u2019s Entourage has:<\/span><\/p>\n