Today marks Rare Disease Day, a time when communities around the world come together to raise awareness and show support for those living with rare diseases. It’s a day to celebrate resilience, promote understanding, and advocate for much-needed research and resources.
Recognizing the Rarity:
In the vast landscape of medical conditions, neurofibromatosis and schwannomatosis distinguish themselves with their unique characteristics and challenges. Affecting 1 in 2,000 births, these conditions – characterized by the growth of tumors on nerve tissue – present complex journeys for those affected, requiring heightened awareness and support. Initiatives like Rare Disease Day help amplify patient voices.
Raising Awareness, Making Impact:
Awareness is key to driving progress. By shedding light on NF and other rare diseases, the Children’s Tumor Foundation spark conversations, inspires research, and improves the lives of patients and families. Every action contributes to a larger movement of advocacy and support.
A Shining Example of Support:
In our journey to advocate for those affected by NF, we’ve been fortunate to have allies who go above and beyond in their commitment. One such partner is the law firm Goodwin, a pillar of positivity and support in the legal and life sciences community. Through their pro bono work, they’ve demonstrated a profound dedication to making a difference in the lives of rare disease patients.
Gratitude and Appreciation:
We extend our heartfelt thanks to Goodwin for their support and generosity. As we build the future of NF treatments through our platform basket trials, Goodwin has been an indispensable partner, offering invaluable expertise to help ensure that our vision of a better tomorrow for NF patients becomes a reality.
Inspiring Participation
As part of their ongoing commitment to rare disease advocacy, Goodwin will be hosting a Rare Disease Symposium on March 13th, featuring a number of outstanding speakers, including CTF Board Member Ken Rudd, who will share his insights and experiences. We encourage attendance at this terrific event, which can be in-person or virtual.
On this Rare Disease Day and all throughout the year, our collective efforts can bring about meaningful results. Let’s stand together and support those affected by rare diseases, including NF.
