The National Organization for Rare Disorders (NORD) and EURORDIS-Rare Diseases Europe share the global concern that diagnostics, therapeutics and vaccines to address COVID-19 be developed expeditiously. Our organizations represent the 30 million people in the US and 30 million people in the EU living with rare diseases. These individuals are disproportionately at risk if they contract this disease and will be among those who benefit the most when such products are developed and made available.

Notwithstanding our community's stake in solutions for COVID-19, we do not believe that rare disease incentives that exist under our respective laws, the Orphan Drug Act in the US and the EU Regulation on Orphan Medicinal Products, are appropriate for use in this global pandemic in which hundreds of thousands, if not millions, will be affected. These laws have been highly successful at spurring development of therapeutics for those rare diseases which affect a very small number of people in the population and where there was a lack of investment in research.

Community Congress Ad Hoc COVID-19 Response Working Group Webinar

Tuesday April 7 at 4:00pm EST

This webinar will be hosted by teleconference ONLY, not in-person.

Use Webex Link to view slides

or dial 1-650-479-3208

Access Code 665 002 154

Password (if prompted) 1234

This event has ended.

April 1, 2020- Sickle cell disease (SCD) affects ~100,000 individuals in the United States, 3,000,000 in Africa, and millions globally. Individuals living with SCD suffer from both acute and chronic complications that require close contact with the medical system. These include acute sickle cell pain, fever, and the acute chest syndrome (ACS) which is the term used for a constellation of findings that includes chest pain, cough, fever, hypoxia and new lung infiltrates.

There is a significant concern that the overlap of fever and lung disease from COVID-19 with ACS may result in increased complications and amplification of healthcare utilization among individuals with SCD. Moreover, individuals with SCD, in general, experience high utilization of acute care services including emergency departments and hospitals and often present with fever, signs and symptoms of pneumonia or evolving ACS, as well as acute sickle cell pain requiring parenteral therapy. Thus, there may be specific diagnostic, treatment and logistical challenges in meeting the healthcare needs of this population during the COVID19 pandemic.

April 1, 2020 - COVID-19, the coronavirus disease of 2019 - also known as Coronavirus-2 (also called SARS-CoV-2) - and the illness it causes is on everybody’s mind. If you or your family member has sickle cell disease (SCD), you may be worried about what this new disease may mean to you.

The more you learn about COVID-19, the better you can understand what to look for, how to protect yourself or your loved one, and what to do IF you feel sick. Sickle Cell Disease Association of America (SCDAA) and its Medical and Research Advisory Committee want to help you understand COVID-19, how it may affect a person with SCD, and what you can do to help. This version is adapted for sub-Saharan Africa.

The potential health risk posed by COVID-19 for people with SCD is a real concern. The knowledge we have about how COVID-19 will affect those living with SCD is evolving constantly. Information about COVID-19 may change in the coming days, weeks and months. It is important that you stay regularly informed.

The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are working tirelessly to support their communities during this global crisis. Rare disease organizations have felt the impact of the Coronavirus pandemic on all elements of our work including mission-critical programs, research, patient assistance, events, meetings and other activities.

We stand in solidarity with the rare community and would like to extend support for those impacted by COVID-19, directly and indirectly. By sharing resources on how to be prepared and seek proper care under these unusual circumstances, we hope to educate and empower the community during this unprecedented time.

What is Coronavirus?

-It is a new virus (discovered only in December 2019)
-It is not yet well understood, so scientists and doctors are still learning about it
-The virus affects mainly the respiratory tract – from the nasal cavity down to the lungs

What is COVID-19?

-COVID-19 is the illness or disease caused by Coronavirus
-The disease has since spread all over the world and on March 11, the World Health Organisation (WHO) declared it a PANDEMIC.
-The incubation period ranges from 1 day to 14 days (ie, the period from exposure to the virus to the appearance of first symptoms/signs of COVID-19)

GENERAL DOs & DONTs

Dos:

-Listen out for accurate public Health information about COVID-19 (public announcements on Radio & TV – from the NIGERIA CENTRE FOR DISEASE CONTROL (NCDC) and government authorities
-Wash your hands thoroughly and frequently with soap and water (for at least 20 seconds) Or use alcohol-based hand sanitizers where soap and water are not available
-When you have to Cough or sneeze, do so into your sleeve with your elbow bent or into tissue paper – which must be immediately discarded.
-If you travelled to any affected country in the last 14 days, or you have been exposed, stay at home for 14 days. This is called self-isolation
-If you are sneezing or coughing, or have difficulty breathing, CALL THE NIGERIA CENTRE FOR DISEASE CONTROL (NCDC) EMERGENCY NUMBERS:
--0800 – 97 – 0000 – 10 (TOLL FREE)
--+234 708 711 0839 (WHATSAPP)
--+234 809 955 5577 (SMS)
-Wipe railings, door knobs, surfaces with household bleach solution regularly
-Clean your mobile phone with alcohol wipes regularly

DON'Ts:

-Do not panic!
-Do not believe all you read on social media
-Do not use handkerchiefs when you sneeze or cough. Use tissue and discard immediately
-Do not stay in crowded places
-Do not stay near persons sneezing or coughing (keep a safe distance of at least 6 feet from persons sneezing or coughing)
-As much as possible, keep your hands away from your face – mouth, nose, eyes

Each year, the NORD Summit, one of the largest multi-stakeholder events in rare disease, brings together participants spanning the rare community, including rare disease experts and leaders from patient advocacy groups, government, industry, and academia to discuss the most current and critical topics related to rare diseases and orphan products.

Date:

October 17-18, 2022

Location:

Washington, DC

This event has ended.

The Sickle Cell Mental Health Initiative of the Sickle Cell Community Consortium is committed to working with the patients, caregivers, and community-based organizations (CBOs) of the sickle cell community to provide mental health support amid COVID-19.

Click the link to join this Webinar by the Sickle Cell Mental Health Initiative.

Schedule:

Tuesday, April 21, 2020 | 7 PM EST, Webinar Discussion With Q&A

Wednesday, April 22, 2020 | 7 PM EST, Community Chat

This event has ended.

The Sickle Cell Mental Health Initiative of the Sickle Cell Community Consortium is committed to working with the patients, caregivers, and community-based organizations (CBOs) of the sickle cell community to provide mental health support amid COVID-19.

Click the link to join this Webinar by the Sickle Cell Mental Health Initiative. 

Schedule:

Tuesday, April 28, 2020 | 7 PM EST, Webinar Discussion with Q&A

Wednesday, April 29, 2020 | 7 PM EST, Community Chat

This event has ended.

When Damian Jackson was a young man, some lawyers helped his family out. “I admired them,” he remembers. “They were smart, and they helped people out. I thought it would be a good thing to go into if I could.” Now, Damian is a litigator with close to two decades’ trial experience and around a hundred jury trials to his name.

Damian’s desire to help others out doesn’t stop when he leaves the office. The Philadelphia man spends his free time speaking up for sickle-cell sufferers, helping them access the health care they need during a crisis, and working to raise awareness of a disease that’s largely misunderstood by medical professionals.

Damian says he’s lucky. After all, he’s had fifty years of pretty good health. This could be attributed to a balanced diet, enough rest and regular exercise. Or perhaps it’s due to his parents, whose experiences with Damian’s elder sister, also diagnosed with the genetic condition at birth, shaped the way they raised him.