Not sure where to begin? We’ll help.

Receiving a new diagnosis for your child can be a challenging and emotional journey, but you are not alone. We’re here to warmly welcome and support you as you connect with our rare and compassionate community.

Consider this your comprehensive guide to becoming an integral part of our community, where understanding and support are always within reach.

1. Connect & Network

After a new MED13L diagnosis, join our supportive community to connect, share experiences, and gain access to a network dedicated to guidance and care.

By subscribing to the MED13L Foundation newsletter you can stay up-to-date with community news, medical advancements, research breakthroughs, and other highly valuable information for your family.

Connect with fellow MED13L families on our Mighty Network. This private platform lets you communicate with peers, coordinate events, and collaborate on community initiatives. It’s a supportive space for sharing, learning, and growing together.

Dive into our MED13L Facebook Group to find a warm, interactive community. Engage in discussions, share stories, and participate in group activities. It’s a place to form lasting connections and gain invaluable support.

2. Get Informed & Be Proactive

Empower your family with knowledge and action. Consult experts, explore early support, and stay informed with the latest research to proactively manage your child’s MED13L journey.

Reach out to medical specialists who understand MED13L. Gain expert insights, discuss treatment options, and receive personalized care recommendations for your child’s unique needs.

Investigate early intervention programs to support your child’s development. These resources can provide educational strategies, therapies, and support to foster growth and learning.

Stay informed with the latest MED13L research developments. Understanding current studies can guide you towards new opportunities for advocacy and participating in groundbreaking trials.

Helpful Links

3. Get Involved & Contribute

Take an active role in our MED13L family. Help discover new paths forward, contribute to fundraising efforts, and if you can, consider a donation to bolster our collective impact.

Participate in Simons Searchlight to contribute to groundbreaking research and enrich our understanding of MED13L. By sharing your experiences and data, you become a part of a collaborative effort with scientists and families, aiming to drive scientific breakthroughs and foster a deeper comprehension of rare neurodevelopmental disorders. Your involvement is vital, offering valuable insights that could pave the way for new treatments and improved care. Register to join this dynamic initiative where every family’s story becomes a powerful tool for change.

Fuel our mission by leading a fundraising effort. Your initiative can provide critical resources for research and community support, making a direct impact in the lives of MED13L families and your own.

Plan a Fundraiser

We understand that some may not be able to contribute financially, but for those who are, please consider donating online to support the MED13L community. Your generosity can help fund research, educational resources, and support programs that make a real difference.

Need more support?

When in doubt, just reach out.