Updates

July 9, 2020July 9, 2020
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, ... Read more
July 8, 2020July 8, 2020
Genetic Counseling for Families Affected by AADC Deficiency

If you or a family member has a genetic disease like aromatic L-amino acid decarboxylase (AADC) deficiency, you might benefit from genetic counseling. What is genetic ... Read more
July 1, 2020July 1, 2020
What Is Genetic Testing and How Can It Help Diagnose AADC Deficiency?

Genetic testing looks for changes in the genome — an organism’s complete set of DNA — that might indicate the presence of a genetic ... Read more
June 24, 2020June 24, 2020
Reproductive Options for AADC Deficiency Carriers

If you know you are a carrier for aromatic L-amino acid decarboxylase (AADC) deficiency, you may have already spoken to a genetic counselor about your ... Read more
June 23, 2020June 23, 2020
Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization ... Read more

Subscribe to our mailing list

Get regular updates delivered to your email box.

Thanks! Please check your email for a confirmation email.

Updates

Genetic Counseling for Families Affected by AADC Deficiency

What Is Genetic Testing and How Can It Help Diagnose AADC Deficiency?

Reproductive Options for AADC Deficiency Carriers

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Will Another Child of Mine Have AADC Deficiency?

4 Cerebrospinal Fluid Biomarkers May Aid Diagnosis, Study Says

Coalition Will Address Racial Disparities in Rare Disease Communities

Newborn Screening and AADC Deficiency

Study Characterizes Largest Group of AADC Deficiency Patients in Mainland China

Subscribe to our mailing list

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Clinical Trials and AADC Deficiency

AADC Patients Experience Severe Symptoms from Infancy to Adulthood, Study Reveals

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Anesthesia and AADC Deficiency

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

What’s a Dystonic Crisis with AADC Deficiency, and How to Deal With It?

PTC Therapeutics to Seek FDA Approval of AADC Gene Therapy

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Medications to Avoid in AADC Deficiency

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

AADC Activity Can Be Assessed with High Resolution FMT-PET, Study Shows

What Equipment Will my Child with AADC Deficiency Need?

New Method May Help Diagnose AADC Deficiency, Other Genetic Disorders of Metabolism

Mindfulness for Those Caring for a Patient With AADC Deficiency

Spoon Theory for AADC Deficiency Caregivers

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Importance of Support Networks for People Affected by AADC Deficiency

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

Pin It on Pinterest

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Genetic Counseling for Families Affected by AADC Deficiency

What Is Genetic Testing and How Can It Help Diagnose AADC Deficiency?

Reproductive Options for AADC Deficiency Carriers

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Will Another Child of Mine Have AADC Deficiency?

4 Cerebrospinal Fluid Biomarkers May Aid Diagnosis, Study Says

Coalition Will Address Racial Disparities in Rare Disease Communities

What is the iNTD and Its Patient Registry?

Newborn Screening and AADC Deficiency

Study Characterizes Largest Group of AADC Deficiency Patients in Mainland China

Subscribe to our mailing list

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Clinical Trials and AADC Deficiency

AADC Patients Experience Severe Symptoms from Infancy to Adulthood, Study Reveals

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Anesthesia and AADC Deficiency

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

What’s a Dystonic Crisis with AADC Deficiency, and How to Deal With It?

PTC Therapeutics to Seek FDA Approval of AADC Gene Therapy

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Medications to Avoid in AADC Deficiency

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

AADC Activity Can Be Assessed with High Resolution FMT-PET, Study Shows

What Equipment Will my Child with AADC Deficiency Need?

New Method May Help Diagnose AADC Deficiency, Other Genetic Disorders of Metabolism

Mindfulness for Those Caring for a Patient With AADC Deficiency

Spoon Theory for AADC Deficiency Caregivers

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Importance of Support Networks for People Affected by AADC Deficiency

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

Pin It on Pinterest