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Advocacy and Policy
What We Do
Rare epilepsy organizations align around key policy and advocacy initiatives.
Clarify Lamotrogine
warning
REN joined an AES request to FDA for more information and dialogue regarding a recent Lamotrigine warning.
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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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