What Happened During World Rare Disease Day 2016: Part 1

March 16, 2016

World Rare Disease Day swept the globe like a wave of support and awareness this year and we have the submissions to prove it! Take a look at all of the individuals and organizations below who made education on rare disease their mission this February 29th! Stay tuned for even more recap posts as we hear from even more patients and advocates!

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Carrie Ostrea, Cristina Might (, andrea berarducci (cdg cares), and Hudson Freeze (GG MSAB).  Patient impact Grant recipient.


The Ladies of Athenian Society


The Ladies of the Athenian Society are a distinguished group of women whose activities include community service, scholarship and social events. The Ladies are involved in an array of activities on and off the Whittier College campus and share the common strong bond of sisterhood.

Saturday night, Lilly Grossman, a student with an ADCY5 Rare Disease, completed her pledging and became a member of the Athenian Society at Whittier College. This morning, all the members of the society painted the rock at Whittier College in honor of Rare Disease Day. On Rare Disease Day they will be wearing jeans and handing out denim ribbons to students, faculty and staff to educate them on Rare Disease. #rarediseaseday #rarescience #globalgenes
Center for Jewish Genetics
Submitted by Elayne Goldman
“We helped to publicize this event through photos posted on Facebook and Twitter of the staff members for the Center for Jewish Genetics each wearing the denim ribbon. We also used a social media campaign spread out over the week before and a few days after the 29th to publicize.”
RASopathies Network USA at Rare Disease Day at NIH
Submitted by Beth Stronach
 RASopathies Network presented a poster to raise awareness of the link between cancer and birth defects in individuals with mutations in the RAS cellular signaling pathway.
Association (ADEM) Des Maladies Rares
Submitted by Dr. Hamlaoui Mohamed
Sweet Lemon Pies at Speech at Statehouse Sponsored by NORD and Mass Bio
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Submitted by Karen Richards
“I consider my speech to be a success. I was nominated because off of a website I started called I spoke along with 3 other people representing rare disease. I am 16 years old and knew that the majority of people there would be older, smarter and better speakers than myself, so I was beyond nervous. Still, after the speech I was amazed to find so many people coming up to me and congratulating me. I was also invited to tell my story to the representatives and one even came up to me after and offered me her card. It was overall truly an amazing experience.”
India (Seek A Miracle Ataxia Group) Ataxia Support Group
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Submitted by Chandu George

“Our entire family attended a conference by Dr. Ramaiah muthyala (IORD). It was a fun-filled family outing to another city for us. Dr. Ramaiah gave us a chance to speak there and my sister did a short speech.

My sister spoke on being diagnosed with Friedreichs Ataxia and the journey from being unable to walk properly to getting into a wheelchair to later being accepted and living with a rare disease has been difficult, along with me my whole family suffered and later my brother was also diagnosed with same ataxia condition which burdened our family further. Nevertheless, we have accepted our condition and our whole family is dedicated to raise awareness on ataxia’s in our society by providing practical solutions to counsel newly diagnosed patients and continue to serve as Ataxia Patient Advocates, Our main source of strength is our family, we hope future generations will benefit from these rare disease meetings.”

Jett Foundation’s 2016 Rare Disease Luncheon
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Submitted by Christine Mcsherry
“Jett Foundation launched a Duchenne Biotechnology Council (DBC) for industry partners working in the Duchenne space to foster innovation, communication,
transparency, and principled decision-making. This small group will convene quarterly for private 3 hour meetings to discuss a variety of self-chosen topics related to drug development challenges in Duchenne.
“By joining this council, companies will commit to be communicative and collaborative with each other, to making ethical and honest business decisions that put the most important stakeholder-the patient, first, to being as transparent as possible in communicating with the entire Duchenne community, and to constantly reach towards the future of innovation.”

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