With over 7,000 rare diseases and only about 650 with a treatment, we need Congress to encourage research incentives, not reduce them.

People living with a rare disease and their families know all too well what it’s like to get a diagnosis and stay up late at night searching clinicaltrials.gov to see if a clinical trial exists… usually to no avail.?Parents of children born with rare disease forever recall the life-altering moment when told “there’s nothing we can do, just take your child home and love them.”?I, myself, know all too well the impact of hearing “there is no approved treatment for your cancer” when I was diagnosed with a rare cancer in my early 30s. These are real-life, heartbreaking truths that are part of the experience of 30 million people living with rare disease in America.?Families in a health crisis have a glimmer of hope when they find research being done in their loved one’s particular rare disease.?Why make that less likely?

Unfortunately, for the second time in four years, that’s exactly what members of Congress are proposing.?In 2017, Congress cut rare disease research incentives by over $25 billion and today a key House committee approved legislation that would further curtail orphan drug research.?A March 2021 National Organization for Rare Diseases (NORD) study cited 191 approved rare disease treatments that were developed using the very rare disease research incentives that Congress now wants to remove.?NORD has said this bill would threaten “critical, life-saving progress.”?With over 7,000 rare diseases and less than 10% with a treatment, we need Congress to encourage research incentives, not reduce them.?

Everyone whose life has been touched by rare disease should speak up now, loud and clear, to let their elected officials know they oppose this provision.?To take action, visit NORD’s https://rareaction.org/take-action/#/