Jeron Hill
More access to treatment and resources for patients who are new to the community and...
Sam Curtis
I’d rather focus on the rare disease community than focus on my own rare condition...
Stephanie Levin
I was diagnosed with Pompe Disease in February 2021. I’ve probably been symptomatic for about...
Megan Davis
For physicians to be educated on scleroderma. We are not lazy, crazy, seeking attention! We...
Sarah Foye
I envision a future where people with rare muscle disorders like titinopathy (caused by disease-causing...
Cristina Rosa
I am an advocate for legislation pertaining to rare diseases and the parent of Juju,...
Lisa Zaret
I would like more attention called to West Nile virus and the rarest manifestation, meningoencephalitis.
Julie Garza
Mask mandates in all medical settings would make an enormous difference to immunosuppressed patients.
Karen Quandt
The price of rare disease drugs is extremely high. How do we fix this problem?
FRED FABRICANT
Hopefully government and private sources will soon have designated funds to help cure Rare Diseases.
Jenni Ward
I would like to see a change in how our Social Security Administration evaluates disability.
Rebekah Palmer
A big difference to me would be more assistance in occupation as an adult living...
Kim Madden
Rare disease research should be a relay race where we're all carrying the same baton.
Megan Freeman
I would love to see if there could be another clinical trial done for my...
Ruth Hochheiser
Education of the medical community about Orthostatic Tremor, including primary care physicians and neurologists.
Christine McGarvey
Streamline the diagnostic odyssey by improving awareness of rare diseases among the medical community.
Raymond A Huml
I want more robust incentives for companies developing rare disease drugs, especially for ultra-rare diseases.
Alicia Dwyer
I have Susac Syndrome. We need research, as not one organization is doing it.
Tytina Sanders-Bey
Access to care and treatment for specific health challenges. Easier access to prescription medication. Perhaps...
Tammy Jones
My vision is to make connections with Rare Patients, one way I believe I can...
Lesley Bennett
Expand Newborn Screening (including rare epilepsies) and establish Rare Disease Advisory Councils in every state.
Sofia Horan
I hope to tell more patients that there is a treatment and there is hope.
Jhoanny Cardenas
It would be wonderful if there was more focus on Rare Diseases for medical students.
Cindy Choudhary
I would reimagine a healthcare system that could help treat my illnesses and actually listen.
Jeneva Stone
I am hopeful that Maryland, my state, will establish a Rare Disease Advisory Council this...
Janet Wilson
If there’s a way for more families with the same genetic results to submit to...
Kerri Engebrecht
My passion and my plea is for mental health care to be looked at seriously...
