World Homocystinurias Awareness Day

About World Homocystinurias Awareness Day

May 18 is World Homocystinurias Awareness Day. World Homocystinurias Awareness Day is an initiative of patient organisations and consortia globally who have a focus on the homocystinurias. The main objective of World Homocystinurias Awareness Day is to raise global awareness of the homocystinurias and their impact on patients’ lives. We aim to achieve greater disease awareness through educational, fundraising and advocacy activities focused on the homocystinurias.

In its first year, May 18 aims to give special attention to this group of disorders to enable greater disease understanding and greater awareness of the challenges they present to patients and the families that care for them. World Homocystinurias Awareness Day can be used to alert the homocystinuria community to services available to them, it can ignite conversations and prompt visibility within the wider community. World Homocystinurias Awareness Day can lead to greater understanding of this group of disorders amongst family and friends and greater awareness amongst health professionals leading to earlier diagnosis; the key to improving access to treatment and care.

We invite you to join the global movement to spread the word about the homocystinurias and help us acknowledge this day. There are many ways you can show your support for World Homocystinurias Day including:

  1. Be seen by wearing the World Homocystinurias Awareness Day lapel pin.
  2. Share the official logo by adding to your social media profile picture or email signature.
  3. Participating in the ‘Colour me Blue’ virtual challenge by downloading the #GoBlue4HCU cut out and
    posting with the hashtag #GoBlue4HCU and #WHAD2022.
  4. Share our key fact tiles on social media during the lead up and on May 18
  5. Follow us on Facebook and Instagram. For all social media posts, remember to use the official
    hashtags #WHAD2022 and #GoBlue4HCU and tag @hcuglobalaware
    @HCUNetworkAustralia @HCUNetworkAmerica @cblCOnlus @maesmetabolicas
  6. Share the ‘Understanding my Diagnosis’ awareness day video
  7. Donate in support of World Homocystinurias Awareness Day. Your donation will be used by the organiser of World Homocystinurias Awareness Day, HCU Network Australia, to support research for the homocystinurias.
  8. Join our webinar ‘Navigating the Homocystinurias’ to learn how patients, parents and caregivers manage the homocystinurias.

Download all the materials you need to raise awareness on World Homocystinurias Awareness Day:

Social Media Assets

Printable Materials

World Homocystinurias Awareness Day Materials

Educational Videos

World Homocystinurias Awareness Day Short Intro Video

May 2022
Duration: 2min

World Homocystinurias Awareness Day Full Video

May 2022
Duration: 15min

World Homocystinurias Awareness Day Sponsors

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Travere Therapeutics

At Travere Therapeutics we are in rare for life. We are a biopharmaceutical company that comes together every day to help patients, families and caregivers of all backgrounds as they navigate life with a rare disease. On this path, we know the need for treatment options is urgent – that is why our global team works with the rare disease community to identify, develop and deliver life-changing therapies. In pursuit of this mission, we continuously seek to understand the diverse perspectives of rare patients and to courageously forge new paths to make a difference in their lives and provide hope – today and tomorrow. For more information, visit travere.com.

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Aeglea BioTherapeutics

Aeglea BioTherapeutics is a clinical-stage biotechnology company redefining the potential of human enzyme therapeutics to benefit people with rare metabolic diseases with limited treatment options. Aeglea’s lead product candidate, pegzilarginase, is in a pivotal Phase 3 trial for the treatment of Arginase 1 Deficiency and has received both Rare Pediatric Disease and Breakthrough Therapy Designations. The Company began dosing patients in a Phase 1/2 clinical trial of AGLE-177 for the treatment of Homocystinuria in June 2021. AGLE-177 has also been granted Rare Pediatric Disease Designation. Aeglea has an active discovery platform focused on engineering small changes in human enzymes to have a big impact on the lives of patients and their families. For more information, please visit https://aeglea.com.

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Codexis

Codexis is a leading enzyme engineering company dedicated to the development of novel biotherapeutics and high-performance enzymes. Codexis is proud to support the Homocystinuria community, as well as other rare disease communities, through action. Our goals are to build disease awareness, improve quality of life for patients, and discover better treatments.For more information, visit: www.codexis.com/therapeutics.

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Synlogic

Founded in 2014 by two of the world’s foremost experts in synthetic biology, James Collins, PhD, and Tim Lu, MD, PhD, of the Massachusetts Institute of Technology, Synlogic is comprised of visionary scientists –pioneering biologists and genetic engineers working to transform drug discovery and treat disease in a new
way.For more information, visit: https://www.synlogictx.com/.

World Homocystinurias Awareness Day Webcast Sponsor

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Recordati Rare Disease

At Recordati Rare Diseases, we focus on the few – those affected by rare diseases. We believe that every single patient has the right to the best possible treatment. Patients with rare diseases are our top priority. They are at the core of our planning, our thinking and our actions.

Recordati Rare Diseases is a pharmaceutical company that provides treatment for patients with rare diseases. Created in 1990, Recordati Rare Diseases is one of the most active companies in the field of rare diseases.

Our specialty rare disease products are marketed directly by Recordati Rare Diseases in Europe, the Middle East, the U.S.A., Canada, Russia, Japan and Australia, in some Latin American countries, and through selected partners in other parts of the world.

Highly trained specialists and a scientific support team are available to collaborate with doctors, healthcare professionals, patients groups and families, to help improve the quality of life for people with rare diseases.

Thanks to a unique production, packaging and distribution system developed for our products, our dedicated specialists are able to support patients in their home countries.

Recordati Rare Diseases is committed to supporting families affected by rare diseases through there search and development of new therapies and the distribution of specific scientific knowledge throughout the medical community.