ReNU Syndrome Member Checklist

BUILD COMMUNITY

🔲 Learn about ReNU Syndrome

🔲 Join the Map to show strength in our numbers, garner interest for research, and to opt into email communications and research opportunities

🔲 Join the private FB Family Connect support group for parents, guardians, and primary caregivers

🔲 Post an introduction of yourself and your ReNU loved one so our group can get to know your family

🔲 Add to the ReNU Family Photo Album with your child’s name/age/location as the caption

🔲 Browse ‘Featured’, ‘Files’ and ‘Events’ tabs, find older threads, and feel free to ask questions, share tips and participate

🔲 Find a regional group in your country - or start one!

🔲 Submit a Skills & Interests Volunteer Form to join a committee

RAISE AWARENESS

🔲 Submit a clear photo & story for the Gallery to show and tell the world about ReNU, this is crucial for raising awareness, generating scientific interest & advancing research

🔲 Share the Unique Guide with any physicians, family, caretakers, geneticists, and/or hospital contacts

🔲 Like and follow the public FB forum for families, researchers and clinicians and invite your family, friends, clinicians and all others interested in ReNU to do the same

🔲 Sport some ReNU Gear from our Bonfire shop to help get ReNU noticed in the public

🔲 Contact Rachel Anne to request a ReNU FaceBook photo frame

ADVANCE RESEARCH

🔲 Donate to ReNU Syndrome United to help advance the mission of building community, spreading awareness and advancing research and share with your networks

🔲 Create your own Facebook or Zeffy Fundaiser and participate in the #Blue4ReNU viral challenge!

🔲 Create a Clinical Research ID for research data collected across platforms and programs. Example for CRID registration: Disease Name: ReNU Syndrome | Gene: RNU4-2 | Variant: n.64_65insT (or your variant)

🔲 Participate in research opportunities and join the Rare-X Registry!