Patient Advocacy

Patient Advocacy

Acer Therapeutics is a pharmaceutical company focused on the acquisition, development, and commercialization of therapies for serious, rare and life-threatening diseases with significant unmet medical needs. We are committed to supporting the patients and families that need it the most 

Patient support is at the core of everything we do at Acer. 

In support of that, Acer is dedicated to the following principles that serve as a foundation for interactions with rare disease stakeholders: 

  • Make a difference by bringing value to patients and caregivers 
  • Foster and sustain relationships with patient advocacy organizations 
  • Elevate the voice of the patient 
  • Be transparent in communications and business practices
  • Demonstrate compassion, ethics and integrity 

Acer is currently advancing three clinical-stage product candidates: 

  • EDSIVO™ (celiprolol) for the treatment of vascular Ehlers-Danlos syndrome (vEDS) in patients with a confirmed type III collagen (COL3A1) mutation
  • ACER-001 (a taste-masked, immediate release formulation of sodium phenylbutyrate) for the treatment of various inborn errors of metabolism, including urea cycle disorders (UCDs) and Maple Syrup Urine Disease (MSUD)
  • Osanetant for the treatment of induced Vasomotor Symptoms (iVMS) where Hormone Replacement Therapy (HRT) is likely contraindicated 

These product candidates are under clinical investigation and their safety and efficacy have not been established.  There is no guarantee that any of these products will receive health authority approval or become commercially available for the uses being investigated. 

If you are an advocacy organization interested in Acer Therapeutics, or if you are interested in sharing your story and getting involved with our current patient support programs, contact us at advocacy@Acertx.com. 

Advocacy and Professional Organizations:

Annabelle’s Challenge

Annabelle’s Challenge is a UK charity for Vascular Ehlers-Danlos Syndrome. The charity raises funds for research, awareness campaigns and offers support and advice for people living with the condition. The charity also works closely with the NHS Ehlers-Danlos National Diagnostic Service with clinics in Sheffield and London. For more information visit https://www.annabelleschallenge.org/

Backpack Health

Backpack Health builds secure, innovative information tools to help people manage their health journey – including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks. Learn more at www.backpackhealth.com.

Defy Foundation

By connecting researchers, communities, and business leaders, the DEFY Foundation raises research funding and community awareness in support of patients and families impacted by Vascular Ehlers Danlos Syndrome. Learn more at www.defy-foundation.org/.

Ehlers Danlos Society

The Ehlers-Danlos Society is a nonprofit organization serving the global community to affect change and progress in the world of Ehlers-Danlos syndrome (EDS). Their mission is for all people with Ehlers-Danlos Syndrome to have their right for an early diagnosis, good management, respect, and recognition for their condition. The society is involved with:

  • Collaborative research
  • Organizing medical symposia and conferences
  • Bringing together and uniting the EDS community
  • Producing reliable, up-to-date medical literature
  • Building and uniting EDS support groups and charities from around the world
  • Giving HOPE to all those whose lives are affected by Ehlers-Danlos syndrome

Find out more at their website https://www.ehlers-danlos.com/.

EveryLife Foundation

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. The group believes it “can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.” Learn more at https://everylifefoundation.org/

Fight vEDS

FIGHT vEDS is a non-profit started by a vEDS patient and physician. The organization’s mission is to (1) provide patient-friendly information about vEDS, (2) help people quickly and affordably get tested for vEDS, and (3) connect vEDS patients with the right care team and patient support resources. Learn more at www.fightveds.org.

Global Genes

Global genes is an organization made up of advocates, partners and collaborators who are working to eliminate the daily challenges for 1 in 10 people affected by rare disease. The grou seeks to empower patients, build communities & drive forward momentum for rare disease globally. Find out more at their website https://globalgenes.org/

NIH Genetic and Rare Diseases Information Center

The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases. Learn more at https://rarediseases.info.nih.gov/.

NORD

The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

NORD serves the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, and companies developing orphan products. They also work closely with many government agencies, most notably the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). NORD programs are focused on improving the lives of individuals and families affected by rare diseases. Find out more at their website https://rarediseases.org/

Ryan’s Challenge

Ryan’s Challenge is a 501c3 organization dedicated to raising awareness of, and funding research to cure, vascular Ehlers-Danlos Syndrome.

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