Pharma companies can connect with rare disease patients in Health Union's newest social community.

Rare in com­mon: Health Union's newest so­cial com­mu­ni­ty aims to con­nect across rare dis­eases

Rare dis­eases, by de­f­i­n­i­tion, are small cat­e­gories with few­er pa­tients. Yet, the in­di­vid­u­als and fam­i­lies deal­ing with some of the 7,000+ rec­og­nized rare con­di­tions share com­mon ex­pe­ri­ences. De­layed di­ag­noses, in­sur­ance chal­lenges and find­ing physi­cian ex­per­tise are typ­i­cal chal­lenges across most rare con­di­tions.

So Health Union is cre­at­ing a new on­line fo­rum to con­nect peo­ple un­der a broad­er rare dis­ease um­brel­la — and al­so give phar­ma com­pa­nies an­oth­er way to con­nect with those pa­tient in­flu­encers. Health Union’s es­tab­lished so­cial net­work of pa­tient groups in­cludes eight spe­cif­ic rare dis­ease groups, along with dozens of more com­mon health con­di­tions from asth­ma to thy­roid eye dis­ease, but the new RareDis­ease.net aims to in­clude any­one with a rare con­di­tion.

The phar­ma con­nec­tions through Health Union can help those look­ing for rare dis­ease pa­tient lead­ers for re­search, in­sights or mar­ket­ing ef­forts as in­flu­encer spokes­peo­ple. Health Union de­buted its So­cial Health Net­work prac­tice in June that not on­ly con­nects pa­tients to each oth­er, but al­so of­fers ad­vo­ca­cy skill train­ing and paid health­care com­pa­ny op­por­tu­ni­ties.

Am­ri­ta Bhowmick

“It’s a win-win be­cause phar­ma, of course, is try­ing to reach these pa­tients, but pa­tients are al­so try­ing to learn more about treat­ment op­tions, clin­i­cal tri­als, di­ag­nos­tics, etc.,” said Am­ri­ta Bhowmick, Health Union’s chief com­mu­ni­ty of­fi­cer. “And it’s even more im­por­tant for this com­mu­ni­ty be­cause it’s so un­der­served and it’s hard­er for peo­ple to get in­for­ma­tion.”

At RareDis­ease.net, new­ly di­ag­nosed pa­tients and fam­i­lies can browse con­tent about rare dis­ease ba­sics, di­ag­noses, man­age­ment, clin­i­cal tri­als, ad­vo­ca­cy and more. Its so­cial me­dia ac­counts on Face­book, Twit­ter and In­sta­gram will serve as gath­er­ing and con­tent-shar­ing hubs. Health Union is al­so plan­ning fu­ture spe­cial live events that will criss-cross rare dis­eases.

Col­lec­tive­ly, an es­ti­mat­ed one in 10 peo­ple in the US (about 30 mil­lion) have a rare dis­ease, and on­line health com­mu­ni­ties have proven to be im­por­tant, Bhowmick said.

“There’s been mas­sive growth, aware­ness and in­ter­est — and need — around rare dis­eases and a lot of that is the pow­er of the in­ter­net bring­ing peo­ple to­geth­er and dri­ving aware­ness, but it’s al­so in­creas­ing di­ag­no­sis rates and iden­ti­fi­ca­tion of these dis­eases,” she said. “…What’s in­ter­est­ing is there’s a bit of a Venn di­a­gram over­lap with many peo­ple with vary­ing rare con­di­tions hav­ing sim­i­lar ex­pe­ri­ences and chal­lenges.”

Up­dat­ed: FDA re­mains silent on or­phan drug ex­clu­siv­i­ty af­ter last year's court loss

Since losing a controversial court case over orphan drug exclusivity last year, the FDA’s Office of Orphan Products Development has remained entirely silent on orphan exclusivity for any product approved since last November, leaving many sponsors in limbo on what to expect.

That silence means that for more than 70 orphan-designated indications for more than 60 products, OOPD has issued no public determination on the seven-year orphan exclusivity in the Orange Book, and no new listings of orphan exclusivity appear in OOPD’s searchable database, as highlighted recently by George O’Brien, a partner in Mayer Brown’s Washington, DC office.

Tim Pearson, Carrick Therapeutics CEO

Pfiz­er backs $60M in­fu­sion in­to Car­rick, teams up on breast can­cer treat­ment

In a big week for Carrick Therapeutics, the company announced $60 million in funding for its lead breast cancer drug and development of a second program, as well as a collaboration with Pfizer for combo development.

The $35 million from Pfizer comes with an agreement under which Pfizer will support Carrick’s Phase II study of samuraciclib in combination with Pfizer’s Faslodex for advanced breast cancer. Along with the investment, Adam Schayowitz, vice president and development head of breast cancer, colorectal cancer and melanoma at Pfizer global product development, will join Carrick’s scientific advisory board.

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Twit­ter dis­ar­ray con­tin­ues as phar­ma ad­ver­tis­ers ex­tend paus­es and look around for op­tions, but keep tweet­ing

Pharma advertisers on Twitter are done — at least for now. Ad spending among the previous top spenders flattened even further last week, according to the latest data from ad tracker Pathmatics, amid ongoing turmoil after billionaire boss Elon Musk’s takeover now one month ago.

Among 18 top advertisers tracked for Endpoints News, only two are spending: GSK and Bayer. GSK spending for the full week through Sunday was minimal at just under $1,900. Meanwhile, German drugmaker Bayer remains the industry outlier upping its spending to $499,000 last week from $480,000 the previous week. Bayer’s spending also marks a big increase from a month ago and before the Musk takeover, when it spent $16,000 per week.

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Thomas Gad, Y-mAbs Therapeutics founder and interim CEO

FDA re­jects Y-mAbs’ neu­rob­las­toma drug af­ter tak­ing is­sue with clin­i­cal tri­al de­sign

Uncertainty about clinical trial evidence has led the FDA to hand down a complete response letter for Y-mAbs’ neuroblastoma drug, casting a cloud on the future of a candidate that had gone through a long development journey in a rare pediatric cancer.

Y-mAbs said it’s disappointed “but not surprised” given that the agency’s oncology drug advisory committee had voted 16-0 against its drug’s approval a few weeks ago.

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Philip Tagari switch­es Am­gen's dis­cov­ery lab for in­sitro's ma­chine learn­ing tools; CEO Joaquin Du­a­to to chair J&J's board

In February, Philip Tagari will take a few days of retirement and then immediately return to industry. He won’t be leading the therapeutics discovery unit for a large biopharma, though.

He’ll trade in his Amgen hat for chief scientist at a machine learning startup that has reeled in hundreds of millions in capital to lay the groundwork for a much-hyped new model of drug discovery that aims to speed up the time to new clinical assets.

Raul Rodriguez, Rigel Pharma CEO

Rigel Phar­ma scores FDA ap­proval for leukemia, kick­ing off show­down with Servi­er in IDH1

When Rigel Pharma bought olutasidenib from Forma Therapeutics, it acquired a drug that already secured a PDUFA date at the FDA — for February 2023. But regulators are ready to give their OK sooner than that.

The FDA has approved the IDH1 inhibitor as a treatment for adult patients with relapsed or refractory acute myeloid leukemia who have a susceptible IDH-1 (isocitrate dehydrogenase-1) mutation as detected by an FDA-greenlit test. Rigel will market it as Rezlidhia.

Paul Hudson, Sanofi CEO (Romuald Meigneux/Sipa via AP Images)

Sanofi and Am­gen are bring­ing cash to cov­er the ta­ble stakes for the Hori­zon M&A game

With the market cap on Horizon Therapeutics $HZNP pushed up to the $23 billion mark today, one of the Big Pharmas in the hunt for a major league buyout deal signaled it’s playing the M&A game with cash.

Paris-based Sanofi, where CEO Paul Hudson has been largely focused on some risky biotech acquisitions to win some respect for its future pipeline prospects, issued a statement early Friday — complying with Rule 2.12 of the Irish takeover rules — making clear that while the certainty or size of an offer can’t be determined, any offer “will be solely in cash.” And Amgen CEO Robert Bradway came right in behind him, filing a statement on the London Stock Exchange overnight that any offer they may make will “likely” be in cash as well.

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As mon­ey pours in­to dig­i­tal ther­a­peu­tics, in­sur­ance cov­er­age crawls



Talk therapy didn’t help Lily with attention deficit hyperactivity disorder, or ADHD. But a video game did.

As the 10-year-old zooms through icy waters and targets flying creatures on the snow-capped planet Frigidus, she builds attention skills, thanks to Akili Interactive Labs’ video game EndeavorRx. She’s now less anxious and scattered, allowing her to stay on a low dose of ADHD medication, according to her mom Violet Vu.

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Eli Lil­ly’s Alzheimer’s drug clears more amy­loid ear­ly than Aduhelm in first-ever head-to-head. Will it mat­ter?

Ahead of the FDA’s decision on Eli Lilly’s Alzheimer’s drug donanemab in February, the Big Pharma is dropping a first cut of data from one of the more interesting trials — but less important in a regulatory sense — at an Alzheimer’s conference in San Francisco.

In the unblinded 148-person study, Eli Lilly pitted its drug against Aduhelm, Biogen’s drug that won FDA approval but lost Medicare coverage outside of clinical trials. Notably, the study didn’t look at clinical outcomes, but rather the clearance of amyloid, a protein whose buildup is associated with Alzheimer’s disease, in the brain.

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