Honoring pioneers in rare disease research, advocates spearheading change, and innovative companies whose treatments have significantly improved rare disease patient outcomes.

About

The National Organization for Rare Disorders (NORD®) is proud to honor the achievements of our community. Each year, we recognize rare disease heroes —individuals or groups who are driving progress and making a difference on behalf of the more than 30 million Americans living with rare diseases.

Rare Impact Awards® categories are as follows:

  • Policy Changemaker
    Recognizes federal and state policymakers who have advanced policies or regulations that improve the lives of those living with rare disease in the United States.
  • Community Champion
    Honors patient advocates who, individually or as part of a group, have made a meaningful impact in helping to achieve NORD’s mission by improving access to care, accelerating research, or driving policy.
  • Youth Leader
    Celebrates individuals under the age of 18 who have made an outstanding contribution by volunteering their time and efforts to raise awareness of rare diseases.
  • Scientific and Medical Trailblazer
    Recognizes individuals who have made significant contributions to the rare disease community through clinical care or research.
  • Abbey S. Meyers Leadership Award
    Honors a NORD patient advocacy organization member that has made significant contributions to the rare disease community through strong leadership in advocacy, education, research, patient support services, or raising awareness.

Meet the 2026 Honorees

The 2026 Rare Impact Award Honorees are an extraordinary and diverse group that includes pioneers in genetic research, longstanding patient advocacy leaders, and innovative companies whose FDA-approved treatments have significantly improved rare disease patient outcomes. Each Honoree’s story is a testament to the power of rare innovation and perseverance.

Abbey S. Meyers Leadership Award

Prader-Willi Research (FPWR)

Community Champion

Lily Emmanuel

Lily is a passionate rare disease advocate, volunteer leader, and community builder dedicated to increasing awareness, fostering connection, and supporting individuals and families affected by rare diseases.

Community Champion

Maureen Helgren, MD

Dr. Helgren has transformed rare disease education by integrating it into the core curriculum at the Frank H. Netter MD School of Medicine.

Community Champion

Julieta Bonvin Sallago

Julieta has demonstrated an exceptional and sustained commitment to the rare disease community through years of dedicated volunteer service, patient advocacy, and support of NORD programs and initiatives.

Scientific & Medical Trailblazer

Susan A. Berry, MD

A dedicated advocate and mentor, her influence has shaped newborn screening, patient-centered care, and rare disease policy nationwide.

Scientific & Medical Trailblazer

Stephen Kingsmore, MD

His innovations, mentorship, and advocacy have significantly broadened access to genomic medicine for children and families worldwide.

Youth Leadership

Paridhi Tyagi

Pari has demonstrated exceptional leadership, persistence, and commitment to advancing rare disease awareness and genetics education among young people.

Lifetime Achievement Award

Mark Skinner

Policy Changemaker

Stephanie E. Haridopolos, MD DABFM

Dr. Stephanie Haridopolos is a board-certified family medicine physician and prominent public health official who has built a career spanning both clinical practice and high-level government service.

Industry Honorees

Industry Innovation Award

Mighty Therapeutics for FORZINITY™

Industry Innovation Award

UCB for Kygevvi

Industry Innovation Award

Fondazione Telethon for Waskyra™

Industry Innovation Award

Omeros for Yartemlea™

Industry Innovation Award

Jazz Pharmaceuticals for MODEYSO™

Industry Innovation Award

Verastem Oncology for AVMAPKI™ FAKZYNJA™

View All

Frequently Asked Questions

The Rare Impact Awards represent our annual celebration of individuals, organizations, and companies working to better the lives of the rare disease community through advocacy, research, and drug development.

  • Scientific and Medical Trailblazer Awards will be recognized at the NORD® Rare Disease Scientific Symposium.
  • Community Champion, Policy Changemaker, Youth Leader, and Abbey S. Meyers Leadership Awards will be presented at NORD programs and events during the year.
  • Industry Innovation Awards will be presented to each recipient at their U.S. headquarters, where recognition will be shared with employees across various functions at the organization.

For more information about NORD’s Rare Impact Awards and the NORD events where honorees will be recognized, please contact: [email protected]