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Advocacy and Policy

What We Do

Rare epilepsy organizations align around key policy and advocacy initiatives. 

Clarify Lamotrogine

REN joined an AES request to FDA for more information and dialogue regarding a recent Lamotrigine warning.


Lead: Ilene Miller


Support Expedited Vaccine Access for
High-Risk persons

REN joins TSC Alliance in a letter urging the National Governors Association to include individuals with rare diseases and primary caregivers of high-risk individuals as priorities in the administration of any FDA-approved or authorized COVID-19 vaccines. February 2021

Protect Anticonvulsant Access

REN joined EF and other patient advocacy groups in calling for rescission of Six Protected Classes Demonstration and protection of Access to Anticonvulsants.
February 2021

Support Medical Research Funding

REN joined the Ad Hoc Group for Medical Research in support of least $46.1 billion for the NIH in FY 2022, a $3.2 billion increase, or an increase of BRDPI + 5% (7.4%), over the FY 2021 program level.

Encourage Early Diagnosis and Equitable Access to Gene Therapies

REN Members advocate for the Early Diagnosis and Equitable Delivery of Gene-Targeted Therapies to Individuals with Rare Diseases to NCATS. June 2021

Ending the Diagnostic Odyssey Act of 2021

REN signed on to support the US Senators who introduced the “Ending the Diagnostic Odyssey Act”.

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