Newly Diagnosed? Start Here!
ReNU Syndrome Member Checklist
BUILD COMMUNITY
🔲 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 contact united@renusyndrome.org to 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 Clinical Companion and 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
🔲 Create your own Facebook or Zeffy Fundaiser and participate in the #Blue4ReNU viral challenge!
🔲 Contact Rachel Anne to request a ReNU FaceBook photo frame
ADVANCE RESEARCH
🔲 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)
🔲 Register for Citizen Health We need data to power the research ← YOU can help us get to treatment options for ReNU!
🔲 Participate in research opportunities and join the Rare-X Registry!
🔲 Donate to ReNU Syndrome United to help advance the mission of building community, spreading awareness and advancing research and share with your networks