flok Family Camp East: Where Fun & Community Meet Lakeside

flok Family Camp East: Where Fun & Community Meet Lakeside

Over 150 community members gathered in Tuftonboro, New Hampshire for our second annual flok Family Camp East. Learn what made this camp experience unforgettable.

Community Spotlight: Will McClintock

Community Spotlight: Will McClintock

Guthrie-Koch Scholar & flok intern Will McClintock chases his dreams while balancing life with PKU.

What Happens When a Prescription Drug Goes Generic?

What Happens When a Prescription Drug Goes Generic?

Many members of our rare metabolic community rely on specialty prescription drugs—often brand-name medications. Learn what happens when generic versions become available.

Sephience™ Gets FDA Approval for Treatment of PKU

Sephience™ Gets FDA Approval for Treatment of PKU

The U.S. Food and Drug Administration approved Sephience™ (sepiapterin), a new treatment from PTC Therapeutics, for children and adults living with PKU.

flok Family Camp West & Adult Retreat 2025: Our flok Community in Full Flight

flok Family Camp West & Adult Retreat 2025: Our flok Community in Full Flight

This past June, flok hosted its largest Family Camp yet in Antelope, Oregon. Over 330 campers gathered at Washington Family Ranch for a memorable weekend filled with fun, community connection, and delicious low-protein food.

Rare and Remarkable: flok's 2025 Guthrie-Koch Scholars

Rare and Remarkable: flok's 2025 Guthrie-Koch Scholars

The Guthrie-Koch Scholarship program has helped more than 130 students pursue their academic and career goals. Hear the stories and ambitions of our 2025 scholarship winners.

Community Spotlight: Mitchell and Amy Magyar

Community Spotlight: Mitchell and Amy Magyar

Argininosuccinic Aciduria  Like many 17-year-olds, Mitchell Magyar is busy preparing for life after high school. He is diving into SAT prep, touring college... more »

Better Research Through Community-Centered Data Governance

Better Research Through Community-Centered Data Governance

“There’s solid evidence that when you have a deep level of ongoing engagement like the flok community has, you inform better research with better clinical... more »

Shaping Treatment Together: The Power of Patient Voices in EL-PFDD Meetings

Shaping Treatment Together: The Power of Patient Voices in EL-PFDD Meetings

Living with a rare disease often means limited treatment options and few opportunities to share the personal challenges of managing the condition. What... more »

flok Health Awarded Chan Zuckerberg Initiative’s Rare As One Project Grant

flok Health Awarded Chan Zuckerberg Initiative’s Rare As One Project Grant

MONTCLAIR, N.J., (Oct. 1, 2024) –  flok Health (flok) is proud to announce its selection as a member of the Chan Zuckerberg Initiative’s (CZI)... more »