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New Rhode Island Law Prescribes Affordable Medical Foods for Rare Diseases

From an Aug. 19 Valley Breeze article , Lincoln, Rhode Island:  Legislation requiring insurance coverage for special baby formula and prescribed food is now law in Rhode Island.

The new measure abolishes the mandated cap on coverage for those suffering from rare diseases and inherited disorders requiring prescribed nutrition mandates. The bills sponsored by state Sen. Ryan W. Pearson of District 19 in Cumberland and Lincoln, and state Rep. Raymond A. Hull of District 6 in Providence and North Providence, induced testimony from patients and family members of patients who require prescribed diets and formulas during the hearing process. Read More


Sept. 17th & 18th Rally for Medical Research Lobby Day

Medical Research is an issue that the rare disease community cares deeply about. If you would like to participate in this year’s rally: register here

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Floor Vote for Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) may be coming this week

The House is scheduled to vote this week – as early as Tuesday – on the Newborn Screening Saves Lives Reauthorization Act (H.R. 1281). Attached is the coalition letter, signed by the EveryLife Foundation as well as many other Rare Disease groups, urging House leadership to schedule this important vote. This bipartisan legislation will help ensure that infants continue to receive comprehensive, effective and lifesaving screenings for genetic and endocrine conditions soon after birth.

NBSSLRA(HR1281) House Vote Letter

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Huntington’s Disease Action Alert

The Huntington’s Disease Society of America is asking advocates to contact their Members of Congress to expedite Social Security Disability Insurance for patients upon diagnosis.

Huntington’s Disease is a rare, fatal, genetic neurodegenerative disease that progressively causes total physical and …

The Immune Deficiency Foundation Requests Support for Legislation: H.R. 460 Patients Access to Treatment

Under many private insurance plans, patients with rare diseases continue to pay extremely high out-of-pocket costs because their prescribed medication is often placed on a “specialty tier.” Specialty tiers allow plans to impose high coinsurance, in lieu of a co-payment

CMS Letter to Ensure Patients with Chronic Disease Have Access to Treatments

The AIDS Institute, Epilepsy Foundation, and National Alliance on Mental Illness is asking organizations to sign on to a letter to the Centers for Medicare & Medicaid Services (CMS) to ensure patients with chronic diseases have access to affordable treatments.  If

How to Attend a Congressional Town Hall

Taking part in a public or town hall meeting is a great way to build a relationship with your Member of Congress and his or her staff and to raise the profile of the rare disease community to policy-makers.  Such …

Alliance for a Stronger FDA

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