rare disease

Thank You to the Cystic Fibrosis Foundation!

We would like to give the BIGGEST thank you to the Cystic Fibrosis Foundation for making us an awardee of their 2019 Impact Grant! 🎉We are so honored to receive this grant and plan to use it to create virtual components to our events which will allow patients who are unable to attend our events in person the option to attend and participate remotely wherever they are. Once again, thank you to the Cystic Fibrosis Foundation! With your support we will be able to bring even more young adult patients together and ensure that no one is left behind 💜

Registration Now Open to Young Adults for One-Day, Multi-State Health Advocacy Summits to Empower Patients with Chronic Illness

SAN FRANCISCO - July 22, 2019. Registration is now open to patients ages 13 to 30 who live with a chronic or rare disease and would like to attend one of the free events in California, Indiana, or Texas. The events are hosted by Health Advocacy Summit (HAS), a non-profit organization which facilitates community events to help educate, empower, and connect patients. 

The 2019 lineup includes:

These events are free to those who wish to attend, but space is limited. 

“This is an opportunity to connect with fellow patients, gain valuable information and resources from health professionals and take part in empowering discussions with influential activists from the chronic illness community,” says Sneha Dave, HAS Executive Director and senior at Indiana University. 

Dave, who has lived with severe ulcerative colitis since the age of six, decided to create an advocacy event in 2017 during her freshman year for students like her, coping with a chronic condition while juggling school, work, and independence. The event was so successful, she decided to start her own organization to help fund events like these across the country.

The organization’s first summit brought together 14 students and six speakers from across the US. For many attendees, this was their first time interacting with fellow patients their own age.

More events are planned for 2020, including one in North Carolina.

For event details and registration please visit www.healthadvocacysummit.org. When registering, attendees can make accommodation requests, view the event schedule, and read additional information on the venue location and speakers. 

The Health Advocacy Summit team is dedicated to improving the lives of young adult patients through their events, online support networks, and programs. To learn more about HAS please visit www.healthadvocacysummit.org


The Health Advocacy Summits are daylong, no-cost events for young adults (between 13 and 30) with chronic and rare diseases. We want to enable our attendees with the support, knowledge, and skills to become strong advocates for themselves and their communities.  Their mission is to connect and empower young adults with chronic and rare diseases through advocacy events and programs. The Health Advocacy Summit is a recognized 501(c)(3) nonprofit organization. To donate, visit Securely Giving

Learn more at www.healthadvocacysummit.org 

Press Contact:

Sydney Reed

Operations Director, Health Advocacy Summit, Inc.


Don’t Forget Us! Young Adults with Invisible Illness – Experts by Experience

By Sneha Dave

My brain swirled as I waited on the surgery table for my colectomy, the removal of the entire large intestine. I told the anesthesiologist I was ready for him to start the sedation, knowing this is an irreversible surgery, but also knowing I would come out with a new life. I was 13. I thought to myself that for the first time in years, I could go back to school full-time. I could go on a walk in my neighborhood—I would be “normal.” What I didn’t expect was the numerous challenges in reentering society. 


I was diagnosed with ulcerative colitis at age six. Ulcerative colitis is a chronic inflammatory bowel disease that is said to affect primarily the large intestine, but in truth, it affects the entire body—the joints, the mouth, other organs. In young adults, it can create emotional, professional, and social barriers. There is limited research about this, but it is not a debated fact among young patients with ulcerative colitis and other invisible chronic diseases. 

Realizing the barriers that young adults with chronic illness face, I created the Health Advocacy Summit, (HAS) an advocacy event for young adults with chronic diseases. With Summits in nearly four states, this organization has become more than a support system or a fundraising organization—it is a direct tool for empowerment. HAS is not only connecting young adults with similar conditions to each other but also hosts sessions that address different aspects and needs of a chronic disease. 

There is a definite need for more resources to support the community of younger patients who face chronic illness. Further, there needs to be a fundamental change in the way young adult patients are treated by the medical model. When I was diagnosed, my care was rudimentary. I would only see my pediatric gastroenterologist and the occasional specialist for other related symptoms. There was no holistic care, no addressing the psychosocial aspects of chronic disease, especially at a developmental adolescent phase. 

Some medical facilities do have a psychologist integrated within the specialties, such as gastroenterology, which is of incredible value in early intervention therapy. I am hopeful that other hospital systems will become focused on treating the patient as a whole, by including specialists such as psychologists within their practice. 

Nearly 15 years after my diagnosis, I live with a J-pouch, which is my small intestine functioning as my large intestine. I’m not yet what one would classify as healthy, and I’m still seeking effective treatment while hoping for more research. But I feel incredible! I know that there is a wide community of other young adults with invisible illnesses, and given an empowered voice and more recognition, this community can transform the healthcare system to be even more patient-centered—and more effective in not treating the patient as a number, but as a person.

An awesome video about our founder!

Sneha Dave talks about growing up with a chronic disease, the isolation she has experienced as a result of her illness, and what she is doing to create a brighter future for others living with chronic conditions.