Five Questions With: Patricia Weltin

"Fighting a rare disease is not like fighting more common diseases." / COURTESY RDUF

Patricia Weltin of Rumford is executive director and founder of the Rare Disease United Foundation, a rare disease advocacy organization founded in 2011. The nonprofit is a state-based, nondisease specific organization serving communities in Rhode Island, Massachusetts, Pennsylvania, and New Jersey. Weltin here discusses the organization’s growth and funding struggles.

PBN: How did the Rare Disease United Foundation form and what was your motivation as a parent?
WELTIN:
RDUF was formed with one goal in mind: to create an awareness event for World Rare Disease Day that would be inclusive of all rare diseases. My oldest daughter, Olivia, is one of 100 people in the United States with her disease. Traveling to an out-of-state event wasn’t an option. RDUF’s first event was one of the largest in the country. We may have different diseases, but we have a shared journey.
I started to recognize that many things could and should be done at a state-level, like legislation and building relationships with our local schools and hospitals. As RDUF started to grow into other states, I met some amazing parents advocating for their children.
Fighting a rare disease is not like fighting more common diseases. There is very little understanding out there about rare diseases. When my daughter was diagnosed, I spent a lot of time researching her disease as do most parents and people “living rare.” If we want what’s best for our children, we have to fight for it.

PBN: What led to multiple state chapters? Do you have any more plans to expand?
WELTIN:
As RDUF started to grow in Rhode Island, I became connected with some wonderful moms in Massachusetts. Together, we started a chapter in Massachusetts. We implemented our programs from Rhode Island and as our team grew, created new and innovative programs. I think starting out in Rhode Island was part of our success. Word spread quickly in Rhode Island, which led to invaluable connections in Massachusetts.
Now RDUF, has chapters in New Jersey and Pennsylvania. I’m so grateful to all the people “living rare” who have volunteered at RDUF and would love to see more people get involved in other states, whether they do it on their own or as a part of RDUF.

PBN: Of the hundreds of diseases you work to help people cope with or eradicate, does one get most of the organization’s attention?
WELTIN:
RDUF is an umbrella organization working for the 30 million Americans living with 7,000 different rare diseases. Many of these diseases have no formal organization to represent them, to give them a voice. We try to work on the issues faced by everyone living with a rare disease.
The main role of disease-specific groups is to raise awareness and funding for research. At RDUF, we work on advocating through legislation, educating the general public and working with medical schools to educate future doctors. Recently, we created a lecture program that was piloted at Brown University’s Alpert Medical School. Rare patients or parents lecture first year medical students on their disease.
We cannot teach about 7,000 different diseases. We need to teach the medical community that as a rare parent or patient we have valuable information about our diseases. Because there are so few specialists for rare diseases, the parents and patients become “experts.”
We are highly motivated to learn as much as we can. Creating a collaborative relationship with our doctors is vital to ensure the best care possible. This program has been my dream and one of the most important things to happen in rare diseases in 30 years. We are so grateful that Brown University was open and receptive to a program like this. If we can implement this in all medical schools, it will cut down diagnosis time dramatically and lead to better care for rare patients.

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PBN: The “Beyond the Diagnosis” Art Exhibit at Brown University’s Alpert Medical School is scheduled for February of 2015. How did this take shape?
WELTIN:
Last year, for World Rare Disease Day, we did an art exhibit at the Massachusetts State House. The exhibit was paintings by rare disease patients from all over the world. We were going to do something similar again this year when the daughter of one of my board members offered to paint some of our rare patients. We started reaching out to other artists in Rhode Island and Massachusetts to see if there was any interest in creating this exhibit. The response was overwhelming. The art community has been absolutely amazing.
This project was born from the generosity of others. We reached out to Brown to see if there was any interest in putting the exhibit up in Alpert Medical School. We are so grateful to everyone at Brown for their forward thinking and generosity. Having the Beyond the Diagnosis Art Exhibit in the medical school will leave a lasting impression on our future doctors as they see the very real people behind the very rare diseases.
This exhibit is meant to travel and we are working on having it travel to other medical schools across the country.

PBN: What is your greatest fundraising challenge? Any new goals for 2015?
WELTIN:
For umbrella organizations like RDUF, most of the funding comes from the pharmaceutical industry working in the rare disease space. It’s difficult to get funding from companies not working in the rare disease space. Because of the misconception that we are uncommon, they erroneously believe that funding rare disease programs has little value.
Unlike other diseases, we have no donor base. It’s hard to ask the general public for donations for rare diseases. The word “rare” translates to uncommon, which creates a false reality. There are more people living with a rare disease than cancer and HIV combined, most of them children. I would like to change the perception that we are uncommon and would like people to understand research studies on rare diseases leads to better treatments for more common diseases. Spending money to research rare diseases is money well spent for everyone.
The total number of people impacted by a rare disease, including caregivers, is 80 million in the United States alone. We shop, bank, and vote just like people with cancer or other well-known illnesses. We just don’t get any support, despite efforts to get companies involved. I would love to see this change. The rare disease community is a huge demographic that is being completely overlooked.

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