Cystinosis Perspective: RARE Patient Advocacy Summit

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Global Genes 2019 RARE Patient Advocacy Summit was attended by members of our cystinosis community. Natasha Faisca and Clinton Moore share their takeaways from the event.

In September I attended my very first Global Genes conference in San Diego. I chose to attend Global Genes to learn how to be a better advocate for my children, and maybe help others in our small and growing cystinosis community.

The amount of people that attended alongside me was amazing! Over a thousand attendees. To learn that there are not hundreds, but thousands of rare diseases just blew me away. The sessions offered covered everything from family planning to how to navigate social security (which I know for a fact I’m not the only one who is struggling with it).

At the end of the week, I walked away with a strong drive to dive into the rare disease community; to raise awareness not only for cystinosis but for all rare diseases.

I have so much more knowledge on how to navigate insurance companies, how to be a better advocate for my children and how to communicate better with doctors. I also have a new perspective on the rare disease world and I want to be a part of the fight that is going on globally.  – Natasha Faisca, cystinosis caregiver

This September I had a second opportunity to attend the Global Genes Rare Patient Summit. This is what I would consider the “Cadillac” of all the rare disease meetings. With around 1,000 attendees in 2019, this meeting is clearly growing, and at a rapid rate.

It’s always an exciting time when you get to reconnect with friends you’ve made over the years from all different rare disease states. From listening to their successes, failures, and challenges they have had over the past year to sharing your own with them. We may all come from very different rare disease states but we all have something in common. One thing I’ve learned from attending these types of meeting is there are no strangers and everyone is interested in listening and sharing. Were all family. A rare family.

When attending this meeting I try to split it into 2 tasks:

  1. Attend sessions that will benefit my (the cystinosis) community, like how to better lead an advocacy group, how to increase fundraising, or understanding the insurance processes that seem to frustrate us all.
  2. Attend sessions that will benefit me personally, like how to care for yourself while caregiving, how to improve conversations with healthcare providers, or how to insure you are getting the best possible healthcare for yourself or child.

Global Genes does an incredible job at covering a very broad spectrum of topics that affect us all in one way or another. It constantly amazes me how they can find ways to engage the audience and not just have speaker after speaker giving lectures in a language that is hard to absorb.

For me personally, the time with other rare disease organizations, patients and caregivers is by far my favorite. We come from all walks of life from all over the country, so we don’t get to see or speak to each other very often. This time is very special.

Industry also attends this meeting, so this is another opportunity that I take advantage of. Discussing a variety of topics (and often highlighting our pain points) face to face is very beneficial. I find this is the best way to work with industry; facing them head on. This establishes a relationship of transparency and translates into better and fair treatment of our community.

All of the above things can be accomplished at this one meeting. Looking forward to attending again next year to continue learning, educating, and building relationships.  – Clinton Moore, cystinosis caregiver & CRN President