Events

RARE Pride: A Queer Conversation

June 11, 2024

Register now

Does your identity as LGBTQ+ intersect with your life as a rare disease patient, parent, caregiver or ally? We hope you’ll join us and speak about your lived experience managing these impacts. Join us for an informal community dialogue:

RARE Pride: A Queer Conversation

Global Genes will be hosting a forum for stakeholders in the rare disease community to discuss their intersectionality as part of both the rare community and queer / LGBTQIA + community. We wanted to create a safe space for individuals to share their lived experience and provide support for each other.

We will begin with remarks from:

  • Lara Bloom
  • André Marcel Harris
  • Cory Lewis
  • Jas Madhavan
  • Nate Milam II
  • Daniel Price
  • Grayson Schultz

And then we will open the discussion up to all of the attendees. Please share this invitation to attend with any colleagues you feel can contribute to this conversation.

About the Speakers

Lara Bloom
CEO & President, The Ehlers-Danlos Society

Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers- Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions. Lara leads coordinated medical collaboration, raising funds for research and focuses on global progression, education and awareness. Her passion is pushing boundaries and fighting for progression in Patient Engagement and Global Collaboration, and she was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, in March 2020, which commemorated ten years in the field of patient engagement and advocacy leadership. She is a published author in various renowned journals and speaks worldwide at conferences, policy meetings, corporate and fundraising events and academic lectures as an expert keynote speaker.

André Marcel Harris, M.S.W.
Policy Director, Sickle Cell Association of Houston

André is a third-year PhD candidate studying Social Work at the University of Houston’s Graduate College of Social Work. Mr. Harris is the Immediate Past President of the Association of Black Social Workers (NABSW) University of Houston Graduate College of Social Work chapter. André also serves on the Executive Board of the Sickle Cell Association of Houston and holds positions on several other advisory boards for sickle cell and rare disease stakeholders. He is a proud member of Phi Beta Sigma Fraternity, Inc. and serves as the National Sickle Cell Liaison Director, a position that allows him to strengthen the social action interests the fraternity has in supporting the sickle cell community.

Cory Lewis
Founder, RedMoon Project, Inc.

Cory Lewis is a Sickle Cell Warrior and biology major with a focus on public health and biology at Emory University. He is the founder of the RedMoon Project and works full-time as a program coordinator with Sick Cells overseeing 170+ SCD ambassadors. He has joined GA BIO patient alliance, Rare Disease Legislative Advocacy, PhRMA We work for Health, and the Sick Cells PCORI 2022 Engagement Award. Cory pushes for more understanding of the uniqueness and cultural differences of sickle cell disease to identify important solutions to symptoms of SCD and explore research initiatives to highlight the underrepresented SCD populations and all patient-centered impacts.

Jas Madhavan
Patient Advocate

Jas is 33 years old and is the GBS-CIDP Foundation’s Liaison for Utah. Born and raised in southern India, he holds Bachelors and Master’s degrees from the Massachusetts Institute of Technology (MIT) in the fields of Planning and Development. Jas’s journey and struggles with a rare autoimmune neuropathy known as CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) began during his time in college, followed by several years of diagnostic uncertainty and declining health. He was finally able to obtain a definitive diagnosis and access to life-changing treatment, thanks to the support offered by the GBS-CIDP Foundation. Currently on his journey towards recovery, he is strongly motivated to support people from all walks of life facing similar challenges with not only rare autoimmune neuropathies, but rare medical conditions as a whole. Jas is acutely aware of the unmet needs present at the intersection of queer identities and the rare disease space. He is motivated to build a support network for the rare queer community, with a strong emphasis on self-advocacy, pragmatic problem solving, navigating social circles and expanding awareness on rare medical conditions.

Nathanael Milam II
Histio Ambassador, Histiocytosis Association

Nate Milam is an experienced Patient Advocate who graduated with a BS in Health Services Management. He is an Ambassador for the Histiocytosis Association and a Rare Disease Legislative Advocate (RDLA) Intern and Committee Member for the EveryLife Foundation for Rare Diseases. He also serves as a Patient Advisory Board member formed by the collaborative efforts of the Histiocytosis Association and North American Consortium for Histiocytosis (NACHO). He was misdiagnosed with Crohn’s at 7, and correctly diagnosed with HLH at 19.

Daniel Price
Adult Regional Coordinator, TSC Alliance

Daniel Price currently resides in the Seattle/Tacoma area. He was adopted from Mainland China at the age of 3. Daniel has one other sibling from China and two from South Korea. He also is currently living with a rare disease called Tuberous Sclerosis Complex (TSC), mildly impacting his day to day life. He is often referred to as “the one who was adopted and impacted by a rare disease”. Daniel is currently working in aviation, and has found a calling in advocating for the rare disease/ disability and the adoptee community to collaborate and work together to support those affected globally. Daniel is an avid traveler.

Grayson Schultz, M.S.
Health Equity Strategist, Elevate Advocacy

Grayson is an educator and researcher focused on patient advocacy, education, and empowerment. But, he does this work because he is a patient dealing with a laundry list of health conditions, including several that are rare. An award-winning writer & podcaster, Grayson uses his position as a queer, transgender, and disabled activist to improve health equity for all of us and to make the world a better place through relationship building, conversations, and research.