April 07, 2020
SARS-CoV-2

Connecting Rare Disease Patients and Families with Informational Resources on COVID-19

The patient advocacy groups that partner with the Rare Diseases Clinical Research Network are working to support rare disease patients and families during the COVID-19 pandemic. Collected here are several resources they have developed to support their patient and family communities. This post will be updated as new resources are added. To see which consortia study particular rare diseases, please visit our search tool.





Brain Vascular Malformation Consortium (BVMC)

  • Cure HHT shares a continuously updated COVID-19 resources webpage for people with Hereditary Hemorrhagic Telangiectasia (HHT), their families and loved ones, and healthcare professionals.

Developmental Synaptopathies Consortium (DSC)

  • The Tuberous Sclerosis Alliance shares a continuously updated COVID-19 and tuberous sclerosis complex resources webpage for people with TSC, their families and loved ones, and healthcare professionals.
  • The Phelan-McDermid Syndrome Foundation shares a continuously updated COVID-19 Resources webpage to help the PMS community navigate this uncertain time. Resources focus on health, safety, and wellbeing, including official COVID-19 information links, distance learning materials, family activities, stress relief, and virtual connections.

Lysosomal Disease Network (LDN)

Porphyrias Consortium (PC)

  • The American Porphyria Foundation shares a continuously updated COVID-19 and porphyria resources webpage in collaboration with the expert physicians of the Porphyrias Consortium and pharmaceutical partners.

Primary Immune Deficiency Treatment Consortium (PIDTC)

Rett Syndrome, MECP2 Duplications, and Rett-related Disorders Consortium (RTT)

  • Rettsyndrome.org shares a continuously updated COVID-19 resources and activities webpage to support families in the Rett syndrome community. These resources include at-home training sessions, enrichment activities, and webinars. 

Urea Cycle Disorders Consortium (UCDC)

For Patients