Solving Medical Mysteries
Through Team Science

UDN PEER

What we do

UDN Participant Engagement and Empowerment Resource (PEER) is made up of patients and family members who have participated in the UDN. UDN PEER members work with UDN researchers to improve the participant experience, connect families with each other, and share the UDN with others. A primary goal of the UDN PEER group is to provide resources and support for UDN patients and families across the country. If you are a current UDN patient or family member, consider joining our UDN Patients and Families Facebook group or follow us on Twitter and Instagram.

Contact us

We are here for you! If you have questions, concerns, or comments, or just want to connect with other UDN patients and families, please reach out to us by email at peerudn@gmail.com.

Newsletter

Sign up for the newsletter here.

The UDN PEER group publishes a quarterly newsletter for patients and families in the UDN. The newsletter includes patient and family stories, updates on UDN PEER activities and the UDN, and resources tailored to the UDN community’s needs. Check out our most recent version here or our archive of previous newsletters here.

Events

Upcoming events

UDN PEER “Tell Me More” Lecture Series: Undiagnosed Diseases Network Foundation (UDNF): Centering Patients in Diagnosis, Research, and Care

UDN PEER hosts four notable annual lectures, inviting distinguished speakers to speak on today’s emerging high impact topics relevant in research and clinical medicine and related biomedical fields.  Our lecturer’s presentations are targeted to the undiagnosed, ultra-rare and rare disease communities. These lectures are open to everyone.

UDN PEER invites you to attend a lecture titled “Undiagnosed Diseases Network Foundation (UDNF): Centering Patients in Diagnosis, Research, and Care” with Undiagnosed Diseases Network Foundation (UDNF) Board of Directors on Tuesday, March 7th from 1:00 -2:00pm ET.

Please register for the event here!

Join our mailing list for event reminders!

Past events

UDN PEER Presents: The Genome Odyssey Book Launch with Dr. Euan Ashley

UDN PEER “Tell Me More” Lecture Series: Dr. Matthew Might

Radio Health Journal: Undiagnosed Mystery Diseases

UDN PEER “Tell Me More” Lecture Series: Sanath Kumar Ramesh

UDN PEER “Tell Me More” Lecture Series: Dr. Anastasia Wise

UDN PEER “Tell Me More” Lecture Series: Dr. Eric Green

About us

Sarah Marshall (UDN PEER co-chair) resides in Minnesota with her four daughters, her youngest finally received a diagnosis in June 2021 after a 10+ year diagnostic odyssey. Outside of personal and professional advocacy,  she likes to run, kayak, and adventure outdoors.

Stephanie Tomlinson has advocated for her son and others like him for over 20 years. She has been certified in the program Partners in Policymaking and seated on numerous committees surrounding early childhood special education and early detection. Recently, Stephanie was the Patient Support Coordinator for MitoAction. As the first call for help, Stephanie answered calls from patients, caregivers, and care providers looking for support and resources regarding Mitochondrial Disease. She hosts a bi-weekly podcast, Energy in Action, which focuses on the storytelling of patients with rare diseases, and experts in the field discussing their research. She is passionate about people having a voice in their care and strongly urges people to use their voices. It is the experience of those who are battling the disease that holds the answers to treatment.

Kara Anderson lives in Charlottesville, VA. She is very grateful to the UDN. After being undiagnosed for years, she was given a conclusive diagnosis at the Duke site in 2018. She looks forward to celebrating with present and future UDN participants who get closer to and achieve a diagnosis through this instrumental program.

Tia Hopkins and her son, Terren (pictured), are from Maumee, Ohio. Terren has been a part of UDN for a couple of years. They finally had the opportunity to travel to Maryland this past July, and though they don’t yet have a diagnosis, Tia says, “we learned a lot about how special he is.”

Heather Braginton was born and raised in Reno, NV with her three older brothers. She ventured out to California for college where she played volleyball and softball and graduated with her bachelor’s in Physical Education and Kinesiology. She returned to Reno and married her husband in 2015 and welcomed their son in November 2019. Heather and her husband found out about the UDN in August 2020 when their baby was admitted to Stanford Children’s hospital for a bone marrow transplant for an undiagnosed immune disorder, that was thankfully caught on his newborn screening. Heather and her family were eager to join the UDN to seek answers not only for her son but also for her oldest brother who passed from an undiagnosed genetic immune disorder that has lingered over her family for 36 years. She is excited to be a part of the UDN PEER group and hopes she can help spread the great work that is being done, the importance of research, and team up with amazing people and families who want to seek answers too.

Christine McGarvey and her daughter, Brigid (pictured), live in Springfield, PA. Both Christine and her daughter have been participants in the UDN since late 2021 and have been working with the CHOP site. Christine has been on a long diagnostic odyssey and at age 3 her daughter began her own parallel diagnostic odyssey. Christine is very passionate about advocating for those with rare/undiagnosed diseases since both she and her daughter are equally affected. Christine is the Pennsylvania volunteer state ambassador for the National Organization of Rare Diseases (NORD). Although still undiagnosed, participating in the UDN program has taught Christine that storms do not last forever. She is very grateful that the UDN recognized the uniqueness of her and her daughter just like a double rainbow in the sky.

Nikki Patrick lives in the suburbs of Chicago with her husband, Josh, and 3 children, Grace (9), Brendan (7), and Meredith (5). Nikki became involved in the world of rare and undiagnosed diseases after the birth of her 4th child, Felicity. Felicity battled a relentless disease during her short 21 months before she passed away in December 2020. She was enrolled in the Undiagnosed Diseases Network at Washington University in St. Louis and remains undiagnosed. Nikki remains hopeful that Felicity will one day have a diagnosis. Nikki is passionate about advocating for families like hers and joining parents on their undiagnosed journey. 

Casey Robertson Ed.S lives in Mississippi with her husband and daughter Kylie. Kylie, now 16, has been a part of the UDN since August of 2022 and she does not have a diagnosis as of yet. We have been on the journey for a diagnosis since she was about 3 years old. Casey works in the field of blindness through the Professional Development Research Insitute on Blindness at Louisiana Tech University. Casey loves everything about advocacy, gaining services for students that are not being educated adequately, and helping families in need. Outside of the full-time job of being a mother, managing health care for her daughter, and her work at the university and advocacy, Casey loves to Kayak, read, and ride her bike. 

Jessica Swanson lives in Huntsville, Alabama with her husband and two children. Her daughter, Isla, joined UDN in 2021 and was diagnosed with CDKL5 in 2022. Jessica has committed her professional career to helping those on the autism spectrum as a behavior analyst and owner of a multi-state ABA company primarily serving the military community.